Thursday, September 23, 2010

September 23: Day +83


Holy cow, where to begin. I have to begin with another acknowledgement. The comments are still rolling in every five to ten minutes from last night's post! I cannot thank you all enough for the love and energy you put into your responses. It's not just the quantity of responses that blew me away, it is the quality. You all poured your hearts and souls and stories into your comments like never before. THANK YOU! I fell SO DIFFERENT posting tonight. I do not feel like I am posting into the abyss of the internet tonight. I feel like I know who I'm writing to. I feel like I know you, I FEEL connected tonight. For those of you that posted, thank you. For those of you that simply prayed, thank you. For those of you that sent your thoughts, intentions, and positive energy, thank you.

Remember, I have said it before and I'll say it again, I see no difference between prayer, intentions, thoughts, vibes, wishes, hopes, and positive energy. I believe they are all heard and felt, and that they ALL contribute equally, because the intention behind each one is the same. If I sang you a love song that I wrote myself, you wouldn't discount it because of what key I wrote it in, would you? You wouldn't say, "Those were really heartfelt words, but I only listen to love songs written to me in D major, and that was in A major, so go take a hike."

For those who didn't read the comments, I encourage you to. They will refill your faith in humanity if it is at all waning. They have refilled mine. For those of you that did not comment last night, please consider commenting and answering the same question: "Why do you come here? What do you get out of this journey?" I humbly ask again, because of two reasons: the first is that I now feel so much closer to those of you that shared your story last night. I was FILLED with anticipation tonight to write to you! I normally don't feel that way. I feel like we're pen pals now! I know about your families, your faith, your beliefs, your journey to finding us, your trials, your gratitude... there is an intimacy present tonight... all inside a world-wide conversation that we are having together. Last night, we heard from people all over the U.S., Canada, Australia, Sweden, Spain, England, Portugal, and Bulgaria. That is awesome. If you are somewhere other than one of those places, let us know! We are a community. We lift each other up. We come to this common place from all walks of life and all corners of earth to feel something. Hope. Gratitude. Love. Faith. These are things that do not belong to any religion or culture, they are feelings that belong to us all as human beings, and as such, we feel a certain undeniable craving for them in our lives.

Let me tell you how YOUR presence impacted Bella's and my life today... remember I said there were two reasons I'd like to hear from more of you? Here's the second reason.

Today did NOT start out as a good day. We have a new BMT doc today, and when I said to him before rounds that we'd catch him up, and that it's been a roller coaster, he rather nonchalantly remarked without even making eye contact, "Yeah, that sounds like Transplant." One of my pet peeves is when anyone in a patient care position lumps me or my family into a 'segment.' Suddenly, Bella and everything she has endured in the PICU for 81 days now was reduced to a casual one-liner about the entire transplant population. Not a good start for him. Over all, I wasn't displeased with rounds, until the end when Lori, our absolute CHAMPION of a nurse, asked the attending doc what our plan was when faced with these unbelievably low blood pressures. The attending doc had no plan, and just kind of shrugged her shoulders. That did it. In my most controlled voice I could, I said that I wanted Dr. Sidell (spelling?) to come by and look at Bella's right arm for a possible new A-line either today or tomorrow at the latest. Three days earlier, the very same ICU doc told me we couldn't tolerate anything lower than a mean blood pressure of 50, and then promptly let Bella hang out in the 30's for two days because people couldn't believe that the A-line was still working, and just didn't believe it was that low since clinically, Bella looked fine inside and out.

Dr. Sidell was in her room by 11:30 this morning, and said not only could he put a new line in fine, but that the current line is working fine, and that there was no need for a new one at this point. Okay, now at least we can get everyone believing the A-line again. GOOD.

However, only moments before, the new BMT doc came in to see Bella. I told him that I felt like the ICU doc was giving up on Bella, and that she was not following the plan we agreed to just the day before. He very blankly told me that Bella had Capillary Leak Syndrome (CLS) and that patients who have it this bad this far into bone marrow transplant have little chance of surviving.

I can tell you that the way he looked at her while saying this... as if she was already too far gone and out of reach... as if he wasn't even going to get in the water to help save her... as if she was just another statistic in the transplant population... made my blood freeze.

Since when did she have 'Capillary Leak Syndrome?'

Not once in rounds was that diagnosis given. "Hypotension" is the only word that has been used along with occasionally LVOT obstruction. We've talked about her leaky vasculature, and that this is common in BMT and usually corrects itself by about day 30.

I was hoping the new BMT doc was going to keep the flag for Bella waving until we got another ICU doc who was willing to at least keep trying to prop up Bella's BP while we worked through this sedation wean (the whole reason for getting the trach). Now, I feel like he's written Bella off as well. After all the docs left, I was left alone with Bella.

I can tell you I have never felt so alone. The room was dark, and I unwrapped Bella's right hand and held it in mine while she napped. I just couldn't let go. For the first time, I felt like my time with Bella might be drawing to a close, and that I better hold her every second I could while she was still with us. Mind you, I have never felt before today that Bella's life is in danger, and I have never felt that we were 'running out of time.' However, I began to feel those feelings alone in her room today for the first time, and it was terrible.

Finally, I was too hungry to stand any longer, and left to grab lunch. On the way back to Bella's room, I stopped in the rest room and as I washed my hands, I looked at my reflection in the mirror. I looked right into my pupils, and reminded myself that God alone had the power to reverse Bella's condition in that very instance if he chose to. I felt a sense of calm in turning Bella's burden over to God. I felt like it was off my shoulders and onto his, and that he could certainly handle it! I also said that the docs could all go to heck as far as I was concerned. They go home at the end of the day, but this is MY kid, not theirs. Think they would give up if it were their child? Heck no! I also kow that those who survive insurmountable adversity against all odds primarily do so because they BELIEVED they could. Just look to the accounts of the holocaust survivors who admit that the only reason they think they lived while their friends and family perished from starvation and disease all around them was an unshakable determination and belief that somehow, someway, they just HAD to survive no matter what. That undaunting spirit carries the day so often, books are filled with their stories.

They are called "Chicken Soup for the Soul." I am proud to have met Mark Victor Hansen, one of the authors and creators of that best selling line of books. We share a close mutual friend, and Mark knows about Bella. That franchise of books is one of the best selling franchises of books in history with more than - get this - more than 100 MILLION copies in print in 54 languages.

What is the common theme throughout? Inspiration, motivation, triumph over adversity. People beat the odds all day every day all over the world against all the expert's opinions.

So, the only expert I listen to is God, and he hasn't told me to give up yet, so I'm not.

Okay, okay, here's where you all come in. When I got back from lunch, I started reading your comments to myself. Then it hit me, they were for Bella as much as for me and Angelique. So, I pulled up a chair, held Bella's hand, and read each and every one of your comments aloud to her for over an hour and a half today.

The result? Not only was my desire to fight on GALVANIZED by your support, but Bella's blood pressure was the best it has been, and her heart rate the best it's been since Sunday or Monday! YOU WERE THERE, in that 10x10 room with Bella and me today. YOU WERE THE ONES WHO GAVE US A SECOND WIND. The BMT doc and entourage came in while I was reading, and he asked me if I had any other questions about her syndrome or long term or short term prognosis. I told him, "We have a plan, and it's working. When we get to the end of her sedation and we still don't have a blood pressure, you and I can talk then. Until then, you and I have nothing more to say to each other. And by the way, I'm reading Bella letters of support from all over the world. We get about 40-50,000 hits on her blog a month, and none of them are giving up, and neither am I."

Take THAT you know it all and chew on that for a while.

As he was leaving, I told him that Dr. Wagner was coming back later today, and that he had some new ideas he wanted to run by us.

"Those are MY ideas that I gave him!" he quipped in response.


"Well, I'll make sure to quote the primary source if they work," was my reply as he stormed out the door. Don't let the door hit you in the...

So, Dr. Wagner walked in as I was finishing your comments (as of 4 pm our time... I have a lot more to read Bella tomorrow!) with the attending BMT doc (Dr. Doom). Dr. Wagner is holding a research article. It is from Japan, and it is a case study of a child that had a very similar case as Bella with the CLS, VOD, renal failure, etc. They gave the patient a drug called VEGF, and it reversed the symptoms almost immediately.

Dr. Wagner also happens to know two of the Japanese researchers and is emailing them as we speak to find out more about how the patient is doing. He checked with the FDA to see if he could use it in this study and they said yes. He checked with our hospital's pharmacy to see if they carry it and they do. It is predominantly for adult tumor patients, so it has never been used at this hospital in a pediatric BMT patient.

Another first.

The ICU attending doc that is coming on service Monday has a specialty in the area where this drug is regularly used, and was quite enthused about the prospect of using it in this case. So, we will wait a dat or two to hear from the docs in Japan about anything else we need to know about the drug, and we will schedule its use for Monday or Tuesday.

Never give up hope. A miracle may only be an hour away.

Tomorrow, we begin printing all of your letters of home and pasting them all over Bella's walls. That way, when people see the avalanche of support Bella is receiving from around the world, maybe they'll jump on board as well. When you comment, if you are comfortable, please tell us your name and where you are from. We have some of the most amazing letters written, and we have no name to thank in our hearts. If you would prefer to remain anonymous, I completely understand, but today it was really cool telling Bella who was saying the beautiful words I was reading.

God night.


  1. Your mom, dad, and big sister need you, Bella. Good luck in getting well soon!

  2. I visit your blog nightly ... not only to pray for your family and Bella... but to reinforce my faith and gratitude for all of the blessings God has bestowed upon my family. You make me a better mother ... my husband a better father, and both of us stronger Christians.

    We are praying for more good days for Bella!! Good days just HAVE to be on the horizon. We BELIEVE that!!!

    Stay strong, gorgeous little girl with the fabulous socks and perfect pouty lips!!!! (And, you're going to have to go easy on your parents in your teen years... they're getting quite a workout now to make up for it!) :)

    Prayers and love to all of you from California

  3. Beautiful Bella. My name is Amy and I am a mommy in Dallas Texas. I have 3 wonderful children. In fact I have two little girls who were born just a week before you and they have a big brother who is 3 years old. Every day I look at them I see you. I know you want to be out of that hospital and running and climbing things and mashing spaghetti all in your hair. And driving your big sister crazy by getting in her toys.

    Because of you Bella I stop and enjoy my momments with my kids. I hug them and kiss them and tell them I love them a million times a day. And I know someday soon you'll be loving and hugging and kissing on your mommy and daddy too.

  4. Hey there.
    Greetings and love from India. :)

    I know it's a hard time for all of you but you know how they say "If some of them only knew how close they were to their dreams before they quit".
    So just NEVER give up, not just on Bella, but on hope.

    It's all going to be fine and we know it.


  5. Bella, your spirit and your Daddy's words have touched SO many people! We think about you every day and can't wait until you are awake and can play with your Mommy, Daddy and sister again! Keep those pressures up, Ok?
    Ashley, Mama to Edie, Yakima WA

  6. Every day Bella you are in my thoughts and prayers. This is my first time posting but have been following your amazing fight for awhile. Your spirit is amazing!
    Dad give them hell! The squeaky wheel gets the grease! After being an pediatric ICU nurse for many years, I found that sometimes you need to fight and be loud! You know your child better than anyone else!!!! You are doing an amazing job and are one of the most amazing parents ever!

    I look so forward to a blog post of Bella saying, "Yeah, when I was born, I had this rare condition, but when they brought me home from the hospital, it went away."
    Stay strong and keep up the fight! Thinking of you and your family!

  7. Hi Bella,

    My name is Kristi and I found your story through your precious friend Jonah's blog. You see, I am a nurse in the newborn critical care center and each day, I take care of very sick babies. People often ask me, "How can you do that everyday? Those babies are so fragile and I would cry all day." Little do they know, a child's strength rivals that of the bravest soldier and the joys of being a first hand witness to that type of vigor is bearing witness to a miracle everyday. I see that fire in your eyes Bella. It comes straight from your soul. You will fight this Bella and you will prevail! You have a mama and daddy who will go to the ends of this Earth for you. You don't have to fight alone. I, too, have a sweet sister as you do. I was the protective, older sister like Ali and I love my little sis just as fiercely as she loves you.

    "Of two sisters one is always the watcher, one the dancer." — Louise Glück.

    May you continue to dance Bella, with all your heart and soul.

    Thinking of you always,

  8. "Why do you come here? What do you get out of this journey?"

    I started reading your blog when my sister in law Piper (a music therapist colleague of yours) showed it to me. After reading a few entries, I didn't think I would return to read more, because it was so heart breaking to see photos of sweet Bella on that hospital bed. But I was pulled in and had to come back, pulled in by the journey, the strength, the faith, the love, that this blog shares every night. Your journey is inspirational and your family is obviously so full of love and faith that is beautiful if sometimes painful to "watch" from my computer screen every night.

    I also choose to read this blog before I go to bed (as opposed to morning or day time) for a more selfish reason: because it helps me count my blessings. I am a mom and have my own fair share of trials and tribulations raising a child, working, etc. But I go to bed every night ready to snuggle my baby boy and appreciate every healthy moment he has (and the unhealthy ones for that matter), just grateful that he is in my arms - despite the fact that at 15 months old he still wakes me up numerous times a night and I am always tired. ;) Your blog and family and journey make me appreciate my own family and journey so much. You are living through such a frightening thing that most parents can't imagine, yet you do it with amazing faith and devotion and perseverance and love. If you can live your days with hope and faith, then I can certainly do the same with my comparatively minuscule problems.

    I am here, I am reading, I am sending my positive thoughts / intentions / energy and I cannot wait to see Bella come out at the end of this and say, "Yeah, when I was born, I had this rare skin condition, but when they brought me home from the hospital, it went away."

    from Cara in Tucson, Arizona

  9. I have been moved, touched and inspired by your journey. Do not give up hope. Every night I try to stay up late to get an update on Bella. I love her and your precious family and pray over your posts daily. I do hug my son a little tighter now, I must admit. Life is precious but God can heal your Bella. Bella still has a fire. Bella is teaching your readers something every day.

    Continue to keep the faith!
    prayers and live from Tennessee,
    the Gladstones

  10. First time posting; letting you know that I stop by daily to pray for Bella and your family. I also watch and wait with quiet expectation as our two year old son has RDEB.

    Barbara and AJ Fischer, Rochester, MN

  11. Bella, we are so touched by your story and legacy. You are so brave and strong. God is so evident in you, your parents, and sister. Keep, keeping on beautiful. We love you.

    I write because I feel led to encouraging and praying. We first read your journey this year from South Carolina, and now back in California. My name is Tiffany, and I love children and music like your daddy, Bella. Our daughter, Rachel had health issues and was hospitalized. Having gone through that, and seeing all you've endured has put you in a special place in my heart. My daughter is only 4 months older than you.

    We are so proud of you Bella. You are very special. Love, Tiffany, Joe, Rachel (19 mos) and Jeremy (4 yrs).

  12. Hi Bella!
    You are amazing to me....I fell in love with you the first time I met you @ Joan's and you cracked a smile at me. Prior to finding out about your blog, I always thought about you every now and again and would call Joanie to get an update on you. My heart hurts and eyes tear up when I hear that you're caught in this current...but I believe with ALL my heart that God is in control! May your room be filled with Angels on guard and may the Lord strengthen the wisdom and hearts of the care team looking over you. I have a special love for you and a special place in my heart where you will always be. I pray for you and send good thoughts your way a dozen times a day! Keep fighting Bella Doll!!! I talk about you daily and it's become the norm for people I come in contact with on a weekly basis to ask me, 'How's Bella doing?' My response is, "just keep praying!" (I hope this post posts tonight...the last 2 nights I didn't see my comment on the post :(
    Good night family and I are praying for you...we are here going strong for you!!!
    love you yesterday, today and tomorrow!

  13. Dear little bella, my names karen and I'm a mother of 3 in arizona. Everyday I wait anxiously for your daddy to update this blog. I come and visit and read his words and see your pretty little face. You remind me everyday of just how precious every day is, I appreciate the people around me more. And i have a firm respect for how strong and courageous you are, and how one small person can show so much spark. You're going to beat this bella, and get home and play with ally and I can't wait to see you sitting up and playing again. So get better sweety pie! I'm praying for you and you cross my mind multiple times a day. All of you guys do, you are such a beautiful strong family.

    Much love, from AZ

  14. I am a retired music professor living in Clovis, CA. with three grandchildren: 2 1/2, 1 1/2, 11 mo. Every day I rejoice in their health and vitality, and every day I pray for the same for your precious Bella.

    I firmly believe in miracles and the power of prayer. And even though Bella seems to be so "out of reach" at this moment, I also believe in the power of music, words of love and support, and human touch to reach and strengthen Bella's spirit and will to live. You two are doing so many things right!

    I am amazed at your unflagging energy and resolve as you deal with this horrendous disease and the human frailty of the medical professionals. (At the same time doing such a beautiful job of finding time for reveling in Ali's life and accomplishments!)

    May you continue to be lifted up by the love and prayers of all of your supporters. Please count me as one of them! With love and prayers to all three of you.

    Karen Waters
    Clovis, CA

  15. Tim,

    There was a time a month or two back when your words irritated me. I thought "he is going to make enemies which won't be good for Bella". It made me concerned for Bella's care. Well...thank you, Tim. Thank you for proving me wrong; your fight and passion doesn't show in everyone, but it sure shines in you. Some may have broken by now, but not you. Bella's life is your job, although not a burden, but you treat it as a mission. As your only mission, until she is better.

    Now when I read, I almost shout "YES!" in reference to sticking it to the doctors. I admire you, everything about you. Just know that when you manage to stay calm and say it nicely, I am shouting it at them for you. We are of the same faith, and I hope to continue to learn from you for a long time. Yes, do give it all to God because no matter how much work the doctors do, no matter how little, God is the ultimate Physician. And someday, I will meet the dad of the amazing Bella, Conqueror of EB-BMT and shake his hand. No, I'd give a hug actually. Maybe a medal.

    Now, the Bella of the Ball; you know how I feel, Sweet Babe. You know who you are, and you know this is not your story ending. Only you and God can decide how it's going to go. The doctors have exceeded their limits; they are standing on the edge of the cliff and they don't want to jump. I'll jump with you Bella. Your Daddy, Mommy, Ali and the whole world, we'll all hold your hand and jump if it means saving your life. We'll stand at those limits and laugh them in the face. GOD IS WITH YOU. FIGHT! FIGHT! FIGHT!

    Ali: You deserve some praise as well. I couldn't imagine your position as the big sister of a sick little baby. I hope that you don't feel like you aren't as important, because Baby you are! Bella needs you. She needs you to cheer for her and to tell her how much you love her. We all must be strong for Bella, and you have to be there so that one day two will be bouncing on trampolines and getting all muddied up on the futbol battlefield. (Hopefully scoring against Arsenal...sorry, I couldn't help myself!) You are Bella's protector, and you are doing an amazing job. Prayers for you Ali, and your strength.

    Thinking of you also Angelique. You keep the family going financially, and you refresh Tim's spirit to fight against doctors. Ali needs you too, so stay strong. God bless you!

    I am not well today. My mood is to not want to care, but of course Bella makes all of that not matter if only for ten minutes. Much love to you guys!


    NAS Patuxent River, MD

  16. Hi Bella!! Glad to hear your BP was up today! It's a long story how I landed on your site, but once I did I wad HOOKED! I pray for you and your family and I agree only God is in control! I pray for Dr. Wagner and your rotating docs too, that they may be used by the Lord and that He guide their every move. Now, I am a nurse and your Daddy has helped to open my eyes to things maybe I don't see on the flip side, so it is now my goal to treat every patient how I know that you want to be treated!! Lots of love!

    Tori, RN NICU
    Shreveport, LA

  17. Late night love from your home state of California!

    I think of Bella constantly - when I am up at 3am feeding my newborn and rest my face against her little bald melon, I think of Bella's precious bald head.

    This afternoon when I slapped that Barbie bandaid onto my 4 year olds scraped elbow, I thought of Bella and wished that a Barbie bandaid was all it would take to fix her.

    When I kiss the cheeks of my darling baby and think "gosh, I wish this newborn acne would go away" I am vividly reminded that you would give anything for a simple case of acne on your babies chubby cheeks.

    I hope that someday Bella will understand just how influential her life has been thus far, how important each and every breath she draws has been to us all, and how much she means to so many. If only love alone was the key to her health, then she would be the healthiest most perfect child in history!

    Fight the good fight, Bella. And if all of this struggle becomes to much, you have an army fighting for you, standing behind you, and loving you forever. We will never give up. We need you to make the world a better place and give us the faith to believe that miracles do happen, because YOU are our miracle.

    Love you, baby girl.

    San Jose, CA

  18. Bella, we will not stop praying, hoping and wishing for your recovery, even if some of your "doctors" say that it's not likely that a patient in your condition will recover. Bella, you are truly blessed, you have your amazing parents, and your wonderful big sister there with you, fighting for you. Bella you have so many people from all around the world, praying for you and thinking positive healing thoughts for you at all hours of the day and night. We truly believe that you will have your miracle turnaround, and maybe this new drug will be "THE" drug that will put you back on the path to health. The doctors need to be humble enough to ask for help from other doctors, or reseachers, and be willing to think outside the "Normal" BMT complications box. We are praying that this new drug will be the key that will unlock the doorway to allow Bella to truly enter the recovery phase of her BMT. You can do it Bella, you WILL be WELL! Thinking of and praying for you, Bella, and your family, from Bowie, Maryland, Judy T.(Leah's Grandma)

  19. Bella you are quite the fighter!! I love that your bp improved while your daddy read messages to you. It is just the part of the equation that was needed to keep your team moving towards your healing. Angelique, your family is in my prayers. Thank you for sharing your family's story and letting us be on Bella's team too!
    Wrapping you all in hugs and prayer as you stay the course.

  20. Hoping and wishing for Bella, I've put an animation in the corner of my computer screen, with beautiful, iridescent turquoise and blue butterflies flying around, and whenever they catch my eye I send positive, positive vibes across the Atlantic. For Bella, for all of you.
    Li MH.

  21. Oh my goodness. As I read your post tonight I was bawling my eyes out. I can not believe the arrogance of "Dr. Doom" today. How could he possibly look at that BEAUTIFUL child of God laying there before him and just write her off like that?! How miserable of a person do you need to be when you can just stand there and act like she isn't worth your time?! Tim, I don't know how you were able to keep your composure with him. You are definitely a stronger person than I. You have the spirit of God with you standing guard next to Bella. WE HAVEN'T GIVEN UP ON YOU BELLA! WE LOVE YOU! I pray for you every night Bella. And I've begun praying for the staff there at the hospital too. Never give up baby girl. Never surrender. Stay strong. You show those drs whose boss. You show them that you can and you will get thru this. God chose you for this trial Bella because you are one of his strongest spirits.

    TIM and Angelique, keep fighting the good fight. You WILL win one day. I'm glad to hear Dr. Wagner had such positive news today about a new drug. I'm keeping my fingers crossed and the prayers flowing. Thanks for inspiring me AGAIN today.

    Take Care,
    Amber McLaughlin,CA

  22. Bella is a fighter for sure. Not sure how much joy and happiness this overwhelming struggle brings her though. Is she hanging out there for her family or for herself? How far can this go on before it is way too unhuman to suffer so much. These are difficult questions and there are no right answers. I wish and hope that after all that she has been through she will win her fight and get well. Praying is probably the only thing the reader is able to do.

  23. Dear Tim and Ringgold family,

    You amaze me with your courage, strength, faith, heart, with so many things! Dear little Bella, please, get better, heal, stay here on Earth and enjoy life with your wonderful family! Your mommy, daddy and big sister, and so many other people love you so much! Please, fight for your life not only for yourself but for us!

    Come on, little darling, your spirit is GREAT, stay here, be alive, get better, sit, smile, run, hold daddy's hands, play with Ali, kiss mommy! There is so much love waiting for you to receive, please, get better.

    Dear medical professionals, i know it is hard to believe that a child in this condition can get better, but you never know for sure. Please, do your best, I know that Bella is inside your hearts too. Please, help her get better, she is such a hope and inspiration for many other sick children all over the globe. You've done so much for her in these 80 days until now, please keep on doing your best for her, she and her family deserve it!

    Many hugs to all of you - Tim, Ang, Bella and Ali. You are not alone, please, keep on moving!


    Varna, Bulgaria

  24. I have commented a couple of times before. I found you through little Jonah's blog. Bella is the one that has made me start praying again.
    Your story inspires me and makes me hug my 4 (almost 5) babies tighter and tighter each night. I have shed many tears for you and your Bella. The strength and devotion you have for your girls is both admirable and inspiring. Get Well Sweet Bella girl, get well soon baby.

    Boise, ID

  25. Bella:

    Do you know that your name in spanish means "beautiful". And how accurate that meaning is for you :)

    I've been following your journey since the beginning and have been praying for you all nights!

    You are an inspiration for us all, and your fighting spirit never ceases to amaze me. You are going to be fine, and very very soon... because you have all the world praying for you, and that's a lot of prayers, you know? ;).

    Get well sweet girl, you are going to be the biggest miracle with an amazing story to share with the world.

    Prayers for you as always:

    Feris from Mexico :)

  26. Hello from Australia. I came to you from someone who posted the blog link of a family fighting so damn hard for their precious baby. I had never heard of this disease before and at I was utterly shocked at what your sweet girl is going through. I'm not a praying person, but I tell you I have not been able to get my mind off you guys. I have come here several times during the day to check up, but with the time zone difference there wasn't an update. I'm so happy to hear there might be something new to try and hope so much it will kick start a new beginning.

    Much commendation to the behind the scenes team of Ali and your wife too. You are Bella's voice and maybe they are her backbone-what do you think?

    Take care, much finger-crossing from me.

  27. Bella, greetings from a sunny but cold Stockholm. Your father asks why I visit your blog and I will try to answer. You and your family remind me of what strength is to be found among us. I am touched by your struggle and you are in my thoughts. Desmond Tutu once said: You don't choose your family. They are God's gift to you, as you are to them. And for me Bella you and your family embody his words in a very special way.

    Now go kick Dr. Doom in the ass and teach him to never, never give up on his patients...especially when he should be thankful to be allowed to have a hand in your recovery!

    Sthlm, Sweden

  28. Bella,

    You most fight and win, there are so many things you still have to experience. The sunrise and the sunset every day, the sound of the Ocean, the smell of the flowers and the trees, your parents teachings, you sister hugs, the friends, the school, the trips around the world, the amazing sensations of being alive and happy. Today i cried while i was reading you dady´s words, and i realised once again that we most keep the faith on you and on your recovery. Today, when i arrive home i will hold my two baby girls hand, as i was helding yours, and we are all going to pray for you. Please, fight..

    Once again all my thoughts are with you and your family, please accept a big kiss from us.

    Sandra Coelho - Portugal

  29. Hi Bella!

    My name is Martha Cate, and I have been reading about your story since before you even got your magic bone marrow from your sister. I love reading what your daddy writes, it's one of the first things I read when I wake up. I know there is a still a fight in you, I see it in the way your daddy writes. NOBODY is giving up on you. Guess what? I'm going to have a baby next year! If my baby has any of the fire that you have, I will consider myself extremely blessed.

    We love you, Bella!

    Martha Cate

  30. I don´t really remember how I came upon your blog. I know that I have been following a little girl in CA that has SMA and I believe that one day somehow in the depths of links I found yours and I have stayed around and watched and prayed every morning that the blog is going to say we have a had a miracle and she is better. I know that is probably not so realistic but as the mother of 2 small boys (4 and 1) it is what I wish and hope for you and your family. Small steps and the time you need are perfect and I know you will leave there one day as the perfect little girl you are. I started looking while I was on vacation this summer visiting my parents and family in MN and have not stopped. I don´t really know why but I do know that it is probably selfish in one way that it brings me back to my feet and helps be realize the joy and happiness in my life and that that should not be taken for granted. I have MS and sometimes it makes me feel down to think that something could happen one day to me and then I see the blog and I say forget about that live today. I hope you get better soon and leave the hospital all better even sooner. Thank you for sharing your story and your beautiful words each morning.

    Jeni, Madrid Spain

    PS Plus my husband was happy to hear that he can watch football in the US if we moved there one day although I don´t know if the Spanish Liga is as popular as the English.

  31. Bella, Hi, my name is Laura. I am 33 years old and I live in Bergish Gladbach, Germany with my husband and 11 month old daughter Anna. We are living here, where my husband grew up, until next fall. I started writing a blog when we moved here in March and because of that I started reading other peoples blogs. I saw a link to Daylon's blog first on a food blog that I like to read and from his blog I found you. Your cuteness (and your dad's excellent writing style) kept me reading and anticipating another post. Every morning now when I wake up, which is seven hours ahead of where you are, I feed Anna and then let her play while I read your story and have a cup of tea. I think about you and your family every day and I pray that God will help you to get better every night. I hope that today will be a good day for you. Thinking of you from a far away place but close in spirit... Laura Valetutto

  32. Hey Bella
    I am a mummy to an EB angel and I read your blog every single day from London, UK. My whole family think about you and all know who you are. My little EB angel was 14 months when we lost him in December 2009 and life without him is just so terrible I miss him more than I have words for.
    Every day we hope that there is an improvement for you and that you are making tracks in the right direction. You are leading the way for so many children as did my little EB angel, he was the best thing that has ever happened to me and I miss him so so much.
    Be strong Bella and try to ride this storm, I hope that your family can be strong and spend as much time with you as they possibly can. Hearing their voices will make you stronger as it did for my little angel when he was really sick.
    I hope tomorrow is a better day for you

  33. Sweet Bella. I have been following her story since around day +45. As themoher of a special needs, medically fragile child I always "Root for the underdog" so to speak. And I've learned that you have to advocate for your sick child, you can't just let the medical professionals make all the decisions. You and Angelique are the most stunning example of this I've ever seen. You inspire me.

    Sending good thoughts to you all.

    Anna Marie

  34. Still praying for you Bella!

  35. Dear sweet Bella,

    I am Carla from Portugal and accompany your journey for almost a year now. My daughter Matilde is 16 months old and also has EB. And she has a (healthy) 4 years-old sister, just like you.

    Every single day I see in my daughters the reflection of your family and realize how blessed I am.

    Matilde had a very difficult beginning. The dermatology team that observed her suspected of Junctional Herlitz and even told us that she might not celebrate her 1st birthday. To keep a long story short, let me just say that we, in our despair, asked to our community and everyone we knew to pray for her. Her recovery was miraculous and the initial prediction of months in the NICU/PICU was reduced to 19-days. She continue to improved in such a way that currently she is able to do everything a baby of your/her age does (walking, talking, eating solid food, etc). We only got the verification of her subtype a few weeks ago, and it turns out to be Simplex.

    To the medical team she is an example of a misdiagnosis. To me, she is an example of a God’s miracle. We just fell like we were given a second opportunity. Every day I praise God for giving me the opportunity of witnessing this miracle.

    All of this to say that I feel, deep in my heart, that you too are a God’s miracle. And God is working in such a way that you are touching all these hearts around the world. I see you as an angel sent to reinforce our strength and faith in God. And God will not let us confused!
    He will place His holly hands over your vessels, your kidneys, your skin, and you will HEAL.
    Just keep your inner light on. Just keep your fire burning. All of us will continue to send you sparkles of strength.

    We all believe in you, sweet Bella.

    Keeping praying for you and your amazing and inspirational family,
    Carla SC, from Portugal

  36. Dear Miss Bella,
    My name is Tina and I work with your cool Mommy!Your mom told me your story in August and since then I have been following along and praying and caring for you and your super strong family in my heart!

    Whenever I see a beautiful butterfly I think of you, when I wake up I think of you, through my day I think of you lovely little girl and am praying and hoping and wishing the fight inside you is still strong!

    Bellq shows those doctor's just how strong you are and come on back to Mom, Dad & Ali! YOu can do it sweet girl and your family knows it and will be with you 100% and so will everyone who reads your story (all around the world)!

    Praying, wishing, hoping, knowning God holds you and your family in his hands and loves you!

    Tina, Mike, Rebecca & Olivia in NJ

  37. Belle, Tim, Angelique, and Ali --

    My sister (a doctor in Oregon who hasn't given up on Bella either!) says that the true difference between a Dr. and a doctor is one who can treats from the book and cannot see a patient and one who first sees the patient and then their family and then their future!

    I pray, think, send vibes, and wonder about you each day. Bella will defy the odds and is teaching us all a thing or too about giving it our all. You are an inspiration and I am hope that today is a new day.

    Keep fighting Bella, I'm pulling for you!
    Tamar in Boston

  38. I have never really commented on any of the blogs I read but this is a first and I am doing it for Bella and her family.

    Why do I come here?? I found the site through accident (well maybe a little push by the one above). I can't even remember how now.. BUT I started reading about Bella in a really hard time in my life, being fired from my teaching job, my first out of college (yes im 34 and JUST finished college in 09) and am now back in college for a second associates degree lol. Well I truly was feeling like the world was collapsing on me, I wasnt making any money for my family my girls couldnt do anything they wanted to do because of finances. I felt like my spirit had been CRUSHED.. it was just devestating..
    Then I started reading about Bella, about her fight about how much she is enduring, about how much she is overcomming, about how much fight she has and I realized if this precious little girl can go through SO SO Much and fight to come out the other side I can get myself out of bed in the morning, I can get dressed I can put one foot in front of the other and fight for myself to regain what I love, my passion my calling for teaching.. I landed two sub positions and work at the college child development center now through the work study program.
    I was just called for a guranteed one day a week job with more than likely leading to full time. BUT Because of Bella I started Fighting to get my career back, my heart and soul back.. Because of her and her families love and caring that comes through every post I finally got myself out of my dark hole.. Bella I can never thank you enough for that sweetie. You keep fighting and I will keep praying.. One day you will look back and it will be a memory, like my 12 year old does about her being a premie and so sick for so long... FIGHT Girl we know you can, we know you got it in you and soon you will be wrapped in your parents and sisters arms like this was just something in the past.

    Christy from Mount Gilead, OH

  39. As I was reading this morning, my 3 year old, Ian, walked over to the computer and said, "whose hand is that?"

    I told him it was Annabella's hand. Then he said, "but I can't see her face."

    So I showed him the picture at the top of the post and he said, "Why does she have all those boo boos? Is she in the hostibowl?"

    (We aren't strangers to the hospital, unfortunately, so he does know what it means to be in the hospital.)

    I told him Annabella was very sick and she needed us to pray for her so she could get better. And he said,

    "God is great, God is good... Mommy, I forget the rest."

    I said, "That's ok. You said enough."

    And then I told him I would finish the prayers for us and he sat with me and looked at Bella's picture as I asked God to show up in a very big way for you today. We have absolutely not given up on Bella! We will be here praying!

    Susan from Pittsburgh

  40. Bella (and the entire Ringgold family),
    I have followed your journey for awhile now. I pray for you regularly. I visit you through your dad's blog each morning, that way I know how to pray for you during the day.

    Little girl, you are so loved! I know your Mommy, Daddy and sister tell you all the time, but you have people who love you that you will probably never meet. I am one of them.

    I am married to my high school sweetheart and best friend. We have 2 grown children. Our oldest is married and is mom to 2 very fun boys (they call me Nana, and I LOVE being their grandmother). Those two boys are going to have a new baby in their lives next spring, we are so EXCITED!

    Our youngest is married to a delightful young lady. They are a great couple together and we are praying for their future children.

    You have taught me to appreciate our good health in a way I've never done before. I've always been thankful, but now I appreciate what we can do.

    I want to get involved with a local RMH but have not acted on it yet. I can see you are going to be the one to push me into action here. Thank you.

    Continuing to pray from Waterford, MI
    Kim M

  41. I am so so so angry with you and FOR you about that doctor's attitude. I am SO TIRED of doctor's giving up and quitting on EB. If the patients could quit EB we would - but we don't have a choice, they shouldn't either. They don't have the right to pick and choose which patients they fight for and which ones they give up on.

    Well - I'm still here and I will NEVER give up on Bella.

    Why and I here? Why do I read every day? I have a vested interest in this fight. For 36 years I have been waiting, hoping, and praying for a treatment or a cure or even a new idea for EB. I have RDEB and frankly I've had enough of it. So, even though I'm too old for the study, every child that is cured through this transplant is a victory for me.

    In the end, I know and I believe with all my heart that Bella will represent a huge victory!

    Here's hoping that Dr. Doom can find his inner sunshine - and quickly!


  42. Bella,

    "I was born with a rare skin condition, but when my parents took me home from the hospital, I was better". Remember this is what you will say someday.

    You WILL get better, you are an amazing child. Continue to fight like you have are LOVED.

    Tim- I am so sorry you ever had to have a day like you did yesterday. I just cried when I read that, definitely NOT what you needed to hear.

    We pray for Bella EVERY DAY AND NIGHT.
    Amanda, Bryce and Corynn

  43. Bella,

    Don't you let those doctors take you from us - none are the Author of Life. We all believe and we all want to be at your second birthday party with all the 'Fabulous Socks of the Day' and postings streamed across your house as decoration!

    When I'm alone with the Lord, I visualize his healing Hand upon your head. I will never give that image up - I will never give up on you!

    Aunt Mary

  44. My morning still starts with my coffee and this blog, to see how Bella is doing, and to send all of my positive thoughts and prayers your way! Here is hoping for some great results with this new drug! I am thinking of you all always....

  45. Dearest Bella: I start each and every morning checking in to see how you are. The rest of my day is spent thinking and praying for you and all the other EB children.

    I just know that you are going to beat this EB. Please do it for my Leah and all the other EB angels out there. Kick some serious EB butt and show these doctors exactly who is in charge, especially Dr Doom.
    God Is So Good.
    I hope to meet you and your family someday, maybe at your Birthday party next year.
    Please take care my beautiful Bella. There are so many people in the world who have fallen in love with you, sweet baby girl. I
    will continue to pray for you beautiful Bella. Love, peace and lots of hugs. Love Leah's Nana

  46. Hi Bella:

    It's Marsha and family from Belvidere, Illinois coming to do my daily check in and offering up many prayers and thoughts for you and you family.
    My son Robbie turned 12 years old today and he told me to tell you that it is his birthday wish for you to get better real fast. Come on baby girl you CAN do it.
    I know that while you are laying in bed you do hear everything people say around you....well I want you to know not to be afraid because those of us praying for you have got your back baby. We DONT think for a minute those doctors have the final say in what happens with you....that is between you, god, your family, and the prayer warriors around the world sending up prayers and good thoughts for you honey.
    We have faith and heavenly father PLEASE kick the doctors in the butts to get them to jump back into the pond and do some good. Bella needs your help father this little girl is fighting a long hard fight...she could use a turn around now father!

  47. Oh boy Bella my 9 year old son Brian and 7 year old daughter Courtney just promptly informed me that I had left them out of my letter....they are sending healing thoughts and wishes your way to Bella!!!!

  48. My name is Alexandra, I am from Sweden but live in Australia.

    I posted yesterday but wanted to write today again because today's post just gave me a chill. It really felt like "in the darkest hour..." when you described that you new drug. My gut feeling is that this drug will be the answer to your prayers. I know that I can't know such a thing but I just got such a good feeling about it and I hope with all of my heart that this will be the turning point!

  49. Hi Miss Bella!

    ok, I have to chime in. I think I've only commented a couple of times in the past. I live in Arkansas and I've followed the blogs of these EB kids for a very, very long time now. I think the whole transplant thing is a very good thing as a whole, but man, what a hard road!

    I just admire these kids AND their families so much. Such brave souls and so strong!

    I have two kiddos myself....a 5 year old and an 18 month old, so this hits home for me.

    Best of luck to you Bella. I KNOW you can pull through this and show those Doctors that you have the greatest physician of all on your side. Thinking and praying for you always.

  50. I was working yesterday and unable to comment. I do however check on Bella(and all of you) daily and continue to lift you up in prayer. God is a mighty and amazing God and *still* works miracles!!!!!

    Michelle from KCMO

  51. bella,
    your aunt mary told me about you and i read about you every day! you are such a brave little girl and i look forward to meeting you some day...i love to give your cousins candy and would love to give you and ali some too!

    tim, i find myself cheering and saying "oh yeah" a lot when i hear you fighting for bella! we all are right behind you, supporting your battle to give sweet bella every chance for recovery :)

    praying for sweet bella and everybody that loves her!

    god bless y'all!

    w-s, nc

  52. Thank you God - if you remember, Bella, my post that your daddy read to you yesterday said "Praying that tomorrow will be a better day, one of fresh ideas - a discovery of some little piece of the puzzle that is missing which will heal your beautiful daughter". God provided a diagnosis of sorts and a new drug to help you Bella. We all knew God would help you. Your daddy, mommy, and sissy will be so glad when you can do pilates on the bed again. Bella, when I watched that video I couldn't stop smiling - you and Ali were so cute together. Get some more rest sweet child of God. And take your medicine like a good girl and then you will be well! Hang in there Tim and Angelique, you've had your darkest hour just before dawn. Things are heading up now. Love you Bella, Terri

  53. My name is Valerie from North Carolina. I am a mom of two little girls (7 and 3). I came to your blog from Jonah's blog. I read your updates every day and am praying for Bella. I cannot imagine the roller coaster ride you all have been on during this time. You are so right in your thoughts that only God can control Bella's future. I will continue to pray for Bella's health, the well-being of you and your family and for God to lead the medical team. God Bless You.

  54. Hi Bella,
    I suspect it is not our wishes but your daddy's voice that helps you rally. Tim, don't wear it out! Glad you found some hope and praying Bella turns the corner now. Lots of love, Pastor Terry at Harbor.

  55. My name in Lindsey and I'm writing from Michigan. OH MY WORD!!! I've been reading your blog for some time now - leaving comments here and there. Today as I sit at my desk I'm tearing up picturing you reading all the comments to Bella I am speechless. HOW amazing!!! I just really have nothing else to say but wow!!! Praise be to God!!! I hope printing and putting the comments around the room will no only re-invigorate Bella but the staff as well. Storming the Heavenly gates in prayer for your precious, beautiful Bella.

  56. We have never meet but I continue to read Bella's blog daily. She is such a strong, beautiful little girl and has so many tricks up her sleeve. She will pull through and is just making your family stronger. I will continue to pray for precious Bella.

    Harrisonburg, Virginia

  57. Precious Bella,

    I am struggling to find the words to explain just how your story has touched my heart and my soul. You are an inspiration, you are brave and strong, and while you may be small, you have impacted my life in a very BIG way!

    Each night I visit your blog to see how your day has been - your daddy writes so beautifully about you and what is going on in your world and his love for you is evident in every word that he types.

    Sweet Bella, you have shown me what it REALLY means to have courage and to be strong - I will think of you whenever I feel alone or frightened and will remember that if you can be brave, then so can I :)

    Stay strong, little one - you are in my thoughts and prayers.

    Lots of love,
    (from New South Wales, Australia -

  58. Hello sweet Bella and family,

    I found myself checking for an update on Bella throughout the evening last night and again this morning. Thank you for taking the time to tell us how she is doing. As I as began to read your post today, it brought about a few tears as I did not know how this post would end. My husband asked, "Why do you read it if it makes you upset?" I explained to him that this journey that Bella is on touches so many lives, its a story of hope and faith, it brings so many people together. I had a hard time explaining to him why. I guess it just boils down to Bella has touched my heart. I have not given up on her, you have never given up her, the people that pray for her have not given up her, and most importantly SHE has not given up. I will keep Bella in my prayers tonight, but I will be saying an extra prayer for Dr. Doom. It sounds like he could use a few prayers too. You can pass on a message to him from Mary and triplets =). . . DO NOT GIVE UP ON BELLA!

    Many hugs,
    Mary, Nick, Lainey, & Gabe
    Omaha, NE

  59. Never give up, not until Bella tells you too. As a NICU nurse, I have seen babies survive 100x more than what anybody thought they would. Stay strong!

    Chicago, IL

  60. I start my mornings seeing how Bella is doing. I walk by the hospital on my way to class and think, it's a new day today. Bella, you have supporters near and far...and giving up is just not an option.
    Love, Lisa from Minneapolis (PharmD student at the U)

  61. Hi my name is Britni from Ohio. I found your blog via another blog I read. I have been hooked since the first time I read this over a month ago. You guys give me inspiration. I thank God every day for my two healthy kids. I think this blog has taught me to cherish the little things more and value the time we have together. Your family seems wonderful and Bella is such a fighter. Bella we are in your cheering section. We know you can do it! Keep up the good work!

  62. Keep the fait. I pray for you and your daugther always. Your children and the same age as mine and my husband is our caregiver just like you. Miracles are real and happen everyday!

  63. Hi Tim, my name is Kristina and I'm from Minnesota. Our neighbors daughter also has EB - how I found your blog. While her case is not as severe, it's still EB. I never even heard of the disease until they found out that she had it. I pray every night for Bella and all the other kids out there with EB. You are so strong, and I'm sure at times you don't feel like it. Keep charging on like you do every day. Bella knows, she hears and feels your love. Keep on those doctors. She is your baby and you are the boss. The support you have from around the world is AMAZING!! Love you Bella.

  64. your undying faith in your daughter is one of the most profound things Ive ever witnessed...your strength each day amazes me...your hope for a normal life for you child should not be so hard to grasp it should be a given.she is an inocent child who has endured so much pain yet she has a father who fights for her when all others give up..that alone will see your baby girl thru this. God has had a special plan for Bella since conception. You keep the faith and know we are praying for you and your butterfly girl. Please tell her what a lucky little girl she is from us.. Your love and faith and hope will get you to the other side!
    I come here daily to read and pray for all of you. Your determination to save your child brings me new found hope for the world..for fathers and dauhters..I wish for my children that they have a Dad like you who loves so freely and fights so hard. KEEP THE FAITH!

  65. Hi, My name is Bonnie, I'm from Arizona. I have a 2 year old daughter, and 9 and 6 year old step sons. I found your blog a few months ago, I don't really remember how I stumbled across it. I was just so amazed that these doctors are actively working toward a cure for this horrible disease. It is very hard to see such a small child going through something like this, I can't even begin to imagine if it were my own daughter. I really hope that Bella is able to beat this and that your family will be all together and whole again soon. Don't give up on her doctors, she is worth it!

  66. Tim, Angelique, Ali and Bella - Keep the faith. Keep praying and believing. Bella hears your paryers every minute of everyday. We will pray extra hard for Bella, so she can hear ours too.

    Praying from Connecticut..

  67. My name is Katherine and I read every day from Birmingham, Ala. I've commented several times before; I'm Jonah Williams' great-aunt. I have three sons, 7, 5 and 2, and they are familiar with EB because of Jonah. We all pray for Bella every day! It infuriates me that the new doc is so blase about Bella, but I have faith that the Lord can change his heart.

  68. I have been following you for the past month or so and I have to say I find your family's strength incredible! Besides being a mom, I am also a nurse so I look at your story from both views. Your blog is teaching and reminding me how to keep the faith not only for you Bella but if I should ever face such a difficult task! Stay strong Bella and I love when patients prove Doctors wrong! Go Girl!!!

    Praying for you in Iowa!

  69. Your blog is one of the first I read in the mornings. I found it through sweet Jonahs blog. Bella you are such a fighter!!! GOD has something special and amazing for you and I can't wait to see it. I know where you get it from after reading your dad's last post. You and your family are such inspiration's. Your struggles are unimagineable but you have a army behind you. You will prove these doctors wrong one tiny miracle at a time..I pray for you and all EB kids daily.

    Jennifer from memphis, TN

  70. We're on Team Bella! Go Bella! (cue the pom poms and marching band!) I am so proud of your strength and fight. You show Dr. Doom how wrong he is -- he doesn't know your spirit and fire. (Tell your Daddy that I, too, am proud of him for not completely losing it when Dr. Doom spoke of defeat.) Dr. Doom is talking science -- he is forgetting that with God everything is possible.

    I read your Daddy's posts every day. I can feel the love all the way from your hospital room. I know God has sent his angels to keep you company while you're sleeping. I know they're telling you wonderful stories about God's love, your Mommy, Daddy and Ali. While you're sleeping you can run and play with the angels while your body heals. Angel can give you lots of hugs and cuddles without injury -- so tell them you need big squeezes!

    Bella, soon I know you'll be running and playing with Ali, swimming in the lakes with her and cuddling like crazy with Daddy and Mommy. I can't wait for the day when I see pictures of you roasting marshmallows and playing in the park on a beautiful summer's day. You will come through this, I feel it. You are a warrior!

    I come to your blog every day to see how you're doing but also for selfish reasons. You have made me so grateful for the health of my little boys (Andrew, my 4 year old, and you share a birthday -- what a wonderful day!)

    Reid, my 14 month old, got me up about two hours early this morning. I think he got me up so we could pray for you. He fell asleep on my chest and I rocked him and for those two early morning hours I thought of you and sent prayers your way. I prayed for your kidneys and blood pressure. I prayed that God hold you, your Daddy, Mommy and Ali in his Hands. I prayed that the doctors and nurses devote themselves fully to you and your care.

    Sending you, your Daddy, Mommy and Ali lots of love!

    Hugs and prayers,
    Kelly in Tampa, FL

  71. Hi Tim, Ang, Ali, and to the star of the show, Miss Bella! I've been reading since shortly after transplant. I'm not exactly sure where I found your blog, but it had to be from one of your fellow EB child's blog. I found Jonah through MckMama when he was born and have been a daily follower ever since. Through Patrice, I learned about this terrible terrible disease. When she shared the news of the transplant, Sam had just had transplant and I started following along her caring bridge site. From there, I have followed each EB BMT child as they fight this battle, praying for each one. I can't bring myself to pray for them to "feel better", "have a good day", "the medicine to work", etc. I can only pray for complete healing. I know our Lord Jesus CAN heal and he is still in the business of making miracles. I pray each night for these babies to the blink of an eye.

    I check your blog several times a day, even though I know that you only update at night...I can't help it...maybe I'm addicted to Bella!!

    Please know that you aren't posting into the oblivion...we are out here and we are praying for Bella...and you...and Ang...and Ali. Daily.

    Dana from Columbus, MS

  72. Good morning, sweet Bella~

    It's Susan here, your "friend in NC". Just so you'll know, I am a high school Spanish teacher...that means I work with the big kids. I don't have any children of my own, but I share my home with several gatos (kitties in Spanish). I do volunteer work in animal rescue, trying to help little orphaned cats and dogs. Do you have any animals at home waiting for you to get back? I think companion animals play a special role in our lives.

    You are going to be a busy girl today, listening to all the letters that are coming your way. When I saw today's picture, I said aloud - "Hey, sweet baby." And then I cried a little bit as I read your daddy's heartfelt words. Bella, Jesus loves you...and so do I...someone you'll probably never meet. But that doesn't keep me from supporting you and praying for your recovery...and for that amazing family you have.

    So Bella Girl...keep fighting and rockin' those fabulous socks!

    Praying for healing,

    A friend in NC

  73. I have been reading your blog for months and I continually pray for all of you. Your faith and strength are amazing and you inspire me daily. Precious Bella has a "fighting" spirit that she gets from her Daddy and as bleak as things seem at times our precious LORD continues to uphold you all and provide. I know that prayer can make a difference in any situation and Bella is certainly being uplifted with the prayers of many. May you continue to be your precious Bella's advocate and "FIGHT" for her as we continue as your prayer warriors. God Bless You All ... Alice in CA

  74. Hey Bella!
    He's got the whole world in His hands! That means YOU precious baby!
    You Go girl!

    Love, Lolli

  75. Ringgold Family,

    I started to read this blog a few months ago. I have been an avid follower of Jonah's blog, and through it, I've come to read the stories of Daylon, Tripp, and your little sweetie.

    Quite frankly, I am not even sure how I came to read Patrice's blog. I am not sure if I typed something in on google and it popped up, or if I saw that someone had a link for it on Facebook-- it has been so long that I'm not sure. I had never heard of EB before, and it has been terrifying to learn a lot of the things I have.

    It has been enlightening, too.

    I am a 22-year-old wife and mother to a brilliant 2.5 year old boy, David. My husband and I are currently expecting Baby Two, due in April, 2010. I sometimes read your blog out loud to my son during the day. He points to pictures of your little girl and asks me if she is hurt.

    I always tell him that she is HEALING.

    I am Buddhist, but it does not stop me from feeling the outpouring of your endless faith and your tenacity for your little girl and her journey in healing. You truly are an inspiration and you make me want to live better, do better, and be better for my husband, my son, myself, and everyone else around me.

    The power of positive thought does wondrous things, and every time I read your blog, I am hoping that some of my positive thoughts will make it to where you are and grace Bella and your family.

    Life is intense for you all, and you're better people for it. Thank you for documenting every little thing.

    Namaste, Ringgolds.

    Lila Conley
    Tiffin, Ohio

  76. Bella and prayer for you today is for peace. Peace that will surround you and let you feel as if you are being held snuggly in the palm of God's hand. No matter what man may think or believe, not one single person knows the great plan that God has in store for Bella's life. She has already touched so many lives.


    PS...I have linked Bella on my blog today as well!

  77. Tim, Angelique, Ali and Bella -

    My name is McKenzi and I'm from Washington State. I visit your blog every morning before work. I have a daughter who suffers from severe asthma and allergies. Now, I know that her struggles are minor compared to what you all are faced with. But watching your child suffer, no matter what the reason, is never easy. Your blog sheds light on the amazing faith and love a family holds. This blog makes me a better mommy. I constantly remind my daughter when she is suffering that it's just making her stronger (while holding back tears). I know that everything happens for a reason and God will only give us what we can handle. These children bring us a reminder of why it's so important to stay faithful, humble and thankful. I lift your family up in prayer and send as many good vibes and love that I can, daily to you. Continue to stay faithful and tell those Docs that seem to have given up to "stick it where the sun doesn't shine" in the nicest way possible! :) May the faith of this universe life you up and give you the strength to push forward.

    Much love and thanks,


  78. Sweet Bella and family,

    My name is Sarah and I live in San Antonio, TX. I used to live in Winston-Salem and had a friend who was friends with Patrice Williams. We prayed for her son when he was born and began following his blog. Through that blog- I found you.

    I get up a little early every morning before work to check on all you kids. I've never met any of you- but I pray for you daily. We pray for you in my ladies bible class every week.

    You inspire so many, including me, to stop and appreciate life. Your Dad inspires me to give my worries to God in exchange for a peace that passes understanding. (It's a kid's song- but its so true!)

    Keep up the good fight girl! I know you have it in you!

  79. Sweet, Sweet Bella!!! I think of you constantly and I anxiously await your daddy's post to see how you are doing and last nights post brought me to my knees in prayer for you and your amazing family. It has been way too long since that happened and you have helped restore my faith, because I just believe that you will come through this and be playing with Mommy, Daddy and Ali in no time. I just want you to know that you are the bravest and strongest little girl I have ever met (along with your family and all other EB Sweeties)!! You have been through so much and continue to endure the toughest obstacles. I come here every day, multiple times, to see your beautiful face and eyes, knowing that you are God's Miracle Baby. God tells us that through him we are HEALED, and Baby Girl, I believe with every ounce of my heart and soul that you WILL BE HEALED. God works miracles and the doctors will see that they DON'T know everything!!! We love you, Ali, Mommy, and Daddy so much!!!
    Bella, you and your family have taught me so much through this journey. I have followed you everyday since before your BMT. I want to tell you that I have two children 7 and 1, and that the love and patience that your Daddy and Mommy have shown you has taught me so much about how to be a better parent(person) and how to enjoy so much more of my kids and life in general. I will continue to follow you every single day, along with Daylon, Tripp and Jonah!! One day sweet baby girl, I sincerely hope we can meet you and your family and see those beautiful blue eyes shining and smiling face, along with Ali's precious blonde curls!!! We love you so much!!! Sending Prayers, Thoughts, and Love
    Susan, Jeremy, Emily(7), Ty(1) from Alabama

  80. Hi Bella,

    I'm writing to you today and maybe your dad will read this to you. If I met you in person, I would tell you how special you are. A child of God. A child so loved by her Heavenly and earthly parents. It is so easy to see how much your Dad, Mom and big sister love you! I would tell you how beautiful you are! Those eyes, that smile and I love your fabulous socks of the day! You have style girl! I really like the flip flop ones. I would tell you to fight hard, don't give up! You may not know it, but you are giving others a reason to live. You give purpose to my day. You give meaning to my prayers. You have touched me from so far away. Why? We may never know the answer to that, but God does. God put you in my life and prayers and that's enough answer for me.
    I will start a novena for you today Bella. I will ask that God sends a complete healing to you and peace to your parent's hearts.
    Every day after I read your blog, I look at your beautiful picture and say (out loud, I know I sound nutty), "Come on Bella, you can do it!"
    Let's all join in my silliness today....
    "Come on Bella, you can do it!"

    Mandy from Louisiana

  81. Bella ... sweet, sweet Bella. I am so grateful that your Daddy and Mommy give the world a chance to walk with them in this journey, to support them, to pray for them and to understand just a small portion of this journey you are on.

    When I read this post from your Daddy, it took me back. I remembered sitting in the PICU with my sweet baby girl and holding her hand, praying and pleading with God to please let her live. Now, she is almost 16-years old ... now I plead with God for other things when it comes to her. :)

    I believe with all of my heart, with all of the other readers of this blog and with your Daddy and Mommy that you will live and will some day say "Yeah, when I was born, I had this rare skin condition, but when they brought me home from the hospital, it went away."

    I know baby girl your miracle is a work in progress. Praying for you, your Daddy, Mommy and precious sister.

    Brooklyn, MI

  82. Keep the faith and keep fighting the good fight, Bella. I am praying for you daily. Traci, Alabama

  83. I am a friend of Brian and Jennifer's. That is how I got linked up to your blog. I check your blog and Daylon's blog every morning to check in with you guys. I am a mom to 3 boys and reading your stories along with Daylon's renews my faith everyday. I feel so close to the Spirit of God reading your stories. I pray for Bella daily. My kids asked me last night who she was and I told her she is one of Daylon's friends who is sick like he is. I think about her all the time. Miracles happen. I watched it with my Mom and I have seen it in my life many times. I'm not giving up on Bella. Doctor's don't know everything. "Some" think that they are the beginning and end of all knowledge and they couldn't possibly be wrong. I hope that this new drug helps Bella. I will be praying for you in my heart all day Monday and Tuesday when you guys try it out.
    Memory from Texas

  84. A song for sweet bella - please sing it to her

    Twinkle, Twinkle little star
    People love you near and far
    Fight as hard as you possibly can
    We pray for you while daddy holds your hand

    Twinkle, Twinkle little star
    You will heal - it's who you are.


    Sallie, James and Maddox

  85. Hi Mr. Ringgold, thanks for telling me this morning about your blog. I just read the last two entries. Very moving. Hoping for you two and for Bella. Talk to you again this afternoon.


  86. Hi Bella. My name is Andrea & I am from Franklin Park, IL. I found you through Jonah's blog & have been checking on you DAILY for quite some time. I never knew about this terrible disease until I stumbled upon Jonah's blog - it truly breaks my heart to know that a helpless child has to deal with such pain. I am a mom to three amazing little girls - 13, 4 & 1. I told my 4 year old all about you - we pray for you & your family every night. I also want to say 'thank you' - you have taught me so much about life & love. It's funny how such a little person has changed my whole perspective on life & made me a better mommy & wife. All my love to you Bella - stay strong, miracles happen everyday. You are always on my mind & in my heart.

  87. Good morning, sweet Bella, most marvellous queen of the fabulous socks! It's Jane. I'm the one who has taken to shouting your name from any high vantage points I can find! I'm one of this band of formerly anonymous fans of yours who are now so proud to be making a bit more noise on your behalf.

    Tim, I read your description of yesterday's peaks and troughs and am truly dispirited to hear of the low points but also I am heartened beyond words by the opportunities that were presented to you yesterday, the glimmers of hope and the prospect of new paths out of the woods.

    And your reading all your emails out loud to Bella? That blew me away. I can see you sitting with your daughter's hand in your hand, and your voice calmly progressing through the thousands of words that flew to you yesterday from every corner of the world. That is such an extraordinary image.

    Yesterday I said it felt like an honour to read your blog. Today, I'll add that I feel truly uplifted to be counted among the hundreds of voices who are all shouting out for Miss Bella.

    The internet is a silent place in the sense that it operates mainly through the written word. But your taking those words and giving voice to them is an incredibly powerful image.

    And the wall of words you are planning? That too is an unbelievably powerful image, about to be made real. Thousands upon thousands of words, sent from computers here, there and everywhere, night and day, every day, until Bella gets better.

    Fondly, from the rooftops,

    Jane (Vancouver, Canada)

  88. I moseyed on over to your blog from Jonut's blog a while back and have kept up with you ever since.
    Every night I just gotta check to see how your day has gone and to offer another prayer for you.
    We are in your corner, Bella. Fight, little girl, fight. We will never give up on you. Pee, sweet baby, pee!! Come on. You know you want to! Get those kidneys working. Get off that nasty dialysis.
    Live, precious one, live!! There are bikes to ride, trees to climb, babydolls to play with and a daddy, mommy & sissy who love you and want you to grow big and strong.
    And I plan to still be around to read your blog when one day your daddy walks you down the aisle as a beautiful bride. That will be an awesome day!!

    Love you, sweet child. Praying and praying and praying so many times a day for you!

    A gramma in Indiana

  89. Tim,
    I am new to your blog, and am moved by your entries. I send you all my hope and prayers. I also want you to of a recent single case report on the use of Bevacizumab (Avastin) for severe capillary leak syndrome post SCT. This is an anti-VEGF antibody, that the authors (also in Japan) report rapidly improved the status of a 6 year old with severe hypotension and post transplant. The link is and you can get it at your hospital library, or email me and I will send you a PDF file of the article. You can bring this to the attention of the BMT team. I wish the best for you and Bella.

  90. Praying for beautiful Bella here in Maryland!
    ~Erin & family

  91. Mornin' Tim,

    I am awed by your writing and all the people who are following this blog. I can't seem to get Bella and your family out of my mind. So many thoughts of caring keep pouring out.

    On the risk of having my latest thoughts go out to the world, I decided to express what I feel about Bella anyway. Never in my lifetime, have I felt that so much love is flooding the world, because of Bella. Bella is an ambassador of peace, love, hope, courage and all things good. Because of Bella, ripples of love keep flowing out all over the globe. The water of those ripples getting bigger and bigger. What other person has ever been this large an influence for goodness in the world. I keep thinking of Christ and his suffering and how it changed the world for so many. Bella is like this. What a privilege to have her for your daughter. HE gave her to you because of who you are, a magnificent human, caring, dedicated, special father. I also think the act of turning over our distress to God starts some sort of great power, hence the Japanese becoming an influence. I will pray greatly this weekend and hold you all in my heart.

    Doctors can be uncaring and not very compassionate in their words. I hold a sentence in my heart that happened 53 years ago. I gasped when I read what the one doctor said. Even My husband is now reading the last two blogs this morning with tears. So much good is touching the world through Bella and you, her mouthpiece. Thank you. Greenie

  92. I came here through a friend on a prayer request, although I'm not quite remembering her name, I felt the need to come here, send prayers, vibes..thoughts..share in your story.

    Being a nurse, I"m so proud of you for being such a strong advocate for Bellas health care. Not many people have the to stand up to doctors, many just assume because they have the expensive educations and what not, they automatically know better. Infact I drive my own family, husband included nuts because I'm a super huge advocate for myself and my children/family and I speak up when I feel things need to be changed, given another option and so forth. My mother will say "well the doctors want this, or that, and they're doctors for a reason'..and I don't always believe they do. They may have medical knowledge and expirence/training, however each person is so very different, every one and every situation must be taken different and theres alot to be said with how you make people feel.
    so I"m babbling, but please don't give up hope. Please don't stop being that strong patient advocate for that darling beautiful girl.
    I also have a "Bella"... All I know is Bella's don't give up easily, are stubborn, full of love but always get what they want.

  93. People Power! Bella is bringing minds,love and prayers together from all over the world! how awesome is that!
    love to all Barb from Melbourne Australia x x

  94. Tim, Angelique, Ali and Bella,
    Let me start off with apologizes for not blogging sooner, I have been sick as a dog all week and just checked in this morning. But GOD is awesome and we all are here today together through the wonders of the internet!!!!! I have said this before I am soooo not good with words. But here I go...

    Bella, sweet little angel. I remember the last day at daycare before you left for your BMT journey, it was a sunny day and we were all at Grandma Joanie’s out front with our kids. It was Ali, Bella, Big Conner, Sierra and Braeden. Of course the kids were all hanging out in Big Conner's mom's mini-van. It is so funny how they love doing that; I call it the V.I.P. Van. We were all just chatting and Bella was in Angelique's arms smiling and giggling at the kids running around. As everyone left and we all drove away I realized that you were about to embark on a journey that would change modern science for the future of us all. As the days passed I found myself thinking and praying for your family, talking to God throughout my day, at work, at home, whenever my inner voice would call. This is something I had not done in very long time, talked directly to God, just Him and I. It wasn’t that I didn’t believe in my Faith, it was my personal relationship with our Lord had been strained for many years. Actually I know for a fact it had been 9 looong years since I had done that. So I talked to our Lord, just He and I, and I knew He was with me, I could feel it. Ever since that day Bella, I talk to God every day. I wait for your Dad's post at night, so before I go to bed I can make sure my prayers for your family are focused. Along with the prayers for all of you, come prayers for my family as well. It is sad to admit, but during those 9 years I still believed but I was angry, not realizing that everything that has happened in my life was because He wrote it that way, He shaped me perfectly into the being that He knew I would and will be. It was and is HIS plan. See I had a lot of anger for my father's sudden death Christmas Eve night. I have carried this anger for 9 years and boy has it weighed me down. But then came you, my sweet angel and your beautiful family. Your family's love, dedication, Faith and determination I cannot put into words except you are all such examples... remarkable examples. So for me Bella, you made an impact in my life that I am forever grateful for. I know that is why our paths have crossed. I find peace when I come to your blog and I read your Daddy’s words, I know that there is good in this world, I know that God loves us and brought us together. Sweet baby, you are a fighter and I know God has BIG plans for you. Bigger than all this and I know you will be healed. I believe in it, I pray for it and I feel it. So today sweet Bella, I thank you and I thank your family. We love you from afar and cannot wait for the day when you say... Yeah, when I was born, I had this rare skin condition, but when they brought me home from the hospital, it went away." Love and kisses~
    The Davidson's

  95. Hi Bella! I posted last night already but I had to come in and read some of your messages from today. So many people love you and are rooting for you! I am going to stay up late tonight so I can hear the news your daddy has for us.

    I hope you're having a good day Bella. And I pray this new drug your daddy is researching for you will be the one that brings you back. And I can't wait for the new Dr to have to eat his words.

  96. Bella & family,
    I have been following your blog for a while now. I found you through Jonah and Tripp. I'm not sure how I found them, but ever since I started reading these blogs, I've been praying for all of my EB babies.
    You give me such inspiration. I have a skin allergy to formaldehyde and a preservative called polyquartenium (which is found in soaps, shampoos, cleaning products, paint, etc.) Whenever I come into contact with it, my skin breaks out into terrible blisters and sores. My hands stay broken out a lot just from shaking other people's hands who have residues from the products they use. Sometimes the pain is too much to bear.
    But, then I think about my EB babies and I know my pain is nothing like yours. I pray for all of you constantly, especially you and Daylon and Elle and the others going through BMT. It saddens me to think of the pain you must go through to find a cure.
    I know that God is with you as you go through this struggle. I am a minister. And, as I visit my parishioners in the hospital, I pray with them. I pray for you, too. May you know that you do not walk this path alone. God is with you. God is holding you close, surrounding you with love and comfort. The kind of comfort and peace that only God can give. Hold to hope, Bella. You are a beautiful child of God. Fight the good fight, Bella and family. And, may you always know that there are prayers lifted up for you daily.

    Grace and peace,
    Pastor Nancy in Ohio

  97. Hi Bella! My name is Tracy, I live in St. Peter, MN (about an hour south of where you are).

    I have never met you or your family, but I have grown to love you still. I have four kids, 18 yr old, 8 yr old, 6 yr old and 2 yr old.

    Just a couple weeks ago I moved my oldest daughter to a dorm at the University of Minnesota just a couple blocks from where you are. As we were walking around campus I looked at the windows of the hospital and wondered where you and your daddy and mommy might be.

    I think of you every day and I know God has a very special plan for you. Now rest while you can because once you get out of that hospital your big sister is going to want to play!

    St. Peter, MN

  98. I landed upon Bella's site because I am a follower of some of the other EB kids. Every morning when I turn on the computer before I open my home daycare I check Jonah, Bella and Daylon's blogs to see how they are all doing. It is such an inspiration to see parents that are such advocates for their children and never losing hope. I am praying for Bella and all of the other children that are fighting this terrible disease.

    Krista in Fishers, IN

  99. Hello sweet Bella,

    I too found you through Jonah's blog, and can't go a day without checking in on you, Jonah, Daylon, and Tripp. Now you listen up there, little missy-- how dare you let Daylon leave without you? It's time to get all of these issues taken care of so you can get out of that hospital and hang out with your boyfriend! Seriously, though, we are praying here for you daily. Your daddy's mission in life is you, sweet girl, and he has taken that mission on with a vengeance. Kudos to him for immersing himself in the medical world and becoming your champion at all costs. I cannot imagine how mentally and physically exhausting it is for him as he throws himself at the challenge of getting you better even when doctors seem to have given up. You have touched so many lives, Bella, and my prayer is that you will continue to do so, but at home, fully recovered. And that you'll get out of there and start a new career as the pesky little sister that drives Ali absolutely crazy! She clearly needs a diva in training! Also, I do so love your socks, girlfriend. Keep up the fabulousness. Elle in Williamsburg, VA.

  100. Opps, I forgot to share a quick story with you Bella. Last month I was in a meeting at work with 2 people that work for a different department and whom I do not know personally, we have only interacted through work related activities. We were done discussing business and the topic changed to family. There in my conversation I started to share your story and how beautiful your family is, I was going on and on for a few minutes. Then Shellie’s (one of the two people from the different department) face had a strange look on it. Shellie goes on to tell me the disease I am describing sounds like the same disease her daughter’s good friend (Jennifer) son has. Then it hit me and I asked her, “Is Jennifer son’s name Daylon?” Shellie gasped and asked me, “How do you know the Edling’s?” My response was, “I don’t but follow and pray for Daylon daily and was connected through Bella’s blog.” Chills spilled over my body and Shellie and I were shrieking with excitement while others were looking at us with confusion. See Shellie’s daughter and Jennifer grew up together in Corona, and Shellie is good friends with Daylon’s grandma. Shellie has known them for many years. Now Shellie and I have become friends on a different level thanks to you and Daylon. And now Shellie follows your journey along with Daylon’s. Shellie sent me this email from Daylon’s grandma the other day. Here it is:

    Hey Shellie! How great is that?!?!? Please tell her Thank you for the prayers & support... I know with all my heart that they are why Daylon is still with us today It's neat to know how many people are praying & following our EB babies. (At the bottom of the blog that Jennifer writes, there's a map of the world & dots indicating places where people are that are following him.... it's incredible to see that he has followers on every continent except Antarctica!!! It's UNBELIEVABLE!!!!!!! Thank you, this has made my day!
    Love you!

    Some would call it six degrees of separation, but I chalk it up to our Lord’s doing. Praying for you always sweet Bella!

    The Davidson’s

  101. Praying for your family..... lots of love from ND

  102. I will pray for your family and Bella every night. The Lord is strong, and has it all under control. Thank you for sharing her story, and she is beautiful. Please giver her hugs and kisses for me, as a mother of two boys, I love her too.

  103. I've been following Bella's journey since before transplant, I think I got here from Kristy's blog? I didn't read daily but I do now that Bella is in PICU, every day I open the blog hoping to see news that she's doing better. What do I get out of it? I'm not sure. Never really thought about it that way. It is a humbling journey. Makes me appreciate what I have. Sometimes when I'm done reading blogs (I follow several), I go and give my little girl a cuddle.
    Wish you all the best. The world is a better place with Bella in it.
    Martina, UK

  104. Dear Bella
    I'm a friend of your Auntie Tracy.
    Since she told us about you, I check first thing every day too see how your day was.
    I then think about you about 100 times each day, sending you so many positive and healing thoughts from England.
    Please be strong and get well soon.
    All our love Lolly and family

  105. wow! nothing worse than a Dr. Doom on staff. i wrote earlier that I found your blog from keeping up with Tripp. Right now, my family and i are also praying for an 18 month old girl, a family friend, who had near drowning in june and is just starting to respond to various therapies... a certain doctor doom had given up on her too and her parents kept pushing the docs. Her name is Emerson and everyone in St. Charles Parish, Louisiana is PUSHing for Emerson. Pray Until She is Healed! I have 3 children myself and 2 new grandbabies and another on the way. So it breaks my heart to see poor little Bella being ignored my ignorant doctors. Hurray for Dr. Wagner and your family! Bella and Ali are both precious! Keep up the fight :) prayers from luling, louisiana

  106. Every night after working the evening shift as a nurse, i run home and check on Bella's day. Every night I read your words and find hope for that sweet girl. I think of her every day and send prayers from Massachusetts.

  107. Hi Bella! My name is Leah, I live in Austin, TX and I am a mommy to 2 wonderful children. I have been following your story and I want to say that I'm so proud of you! You are such a little fighter and are so strong. You have been through more in your short life than any of us will ever go through. You are so blessed to have a family that loves you so much. One day, when you are old and gray, you will look back at this time in your life and understand how much you are loved. Not by just your family, but by people around the world. God gave you a special assignment, little one. You have touched countless lives and given so many people hope. I'm sorry it had to be you sweet angel, but God knew all along. I wish that I could snap my fingers and make all of this better for you. I would take it from you if I could. Stay strong precious one. We are cheering for you and praying for your healing. I would say praying for a miracle, but we know that you are one. I don't know you but I love you and your family. I can't wait to see you up and about, running and playing and having a wonderful life.

  108. Hi Tim and family!

    I just want to say that I am praying for you all daily. I visit this site often to check in on you all and Bella's progress. I usually can't read most of your posts or others comments as I am pregnant and super emotional. So, I just pray and know that God has Bella in his arms... good days, bad days, happy days, sad days. Bella is loved. As I have said to you before... she is an old soul. She inspires me as do you and your family. You should be an inspiration to all for what you have been dealing with, overcoming, etc. Life is a challenge, but we never expect to be challenged as you all have. Not only is God with you all.... we are as well. If there is anything that I can do... please don't ever hesitate to ask. Sorry for the rambles, and know that my heart and prayers are with you and your family.

  109. Bella, I read your blog each morning, but this is the first time I have commented. Beautiful baby, you are an inspiration, hang tough and know many prayers go up for you.

    Mom and Dad: remember, "He won't just get you by, He'll see you through..."

    Keep your heads up...

  110. Keep fighting Bella. You show those doctors who is boss. They don't know how strong you really are. Prayers from Grandma.

    Grandma Carolyn

  111. Hi Tim & Family,

    I'm in Dallas, Texas and I started following your blog since you guys moved into to RMH, I found out about your blog through Tripp's blog. I can't tell you how much I'm hurting for Bella, I cry myself to sleep at night, praying and praying that Bella will surpass all this and be back to her sweet self. I anxiously wait for your updates every night and I'm glad I have an Iphone, I view your updates in the middle of the night, I just have to know that Bella is ok, please don't give up on her, you know more than some of those Dr's. I pray that god will guide you through the right path, to decide on what is best for Bella. You're a strong man, I have all respect for you and your family, for being so strong, do not fall apart, keep fighting, Bella is strong, she has to get through this, I know she will. I'm so devistated, wish I could take all her pain away. I pray that she will heal, that we will all be happy again. Thank you so much for updating the blog, I know you are very tired sometimes, but it sure means a lot to many of us, that you have us informed, ready to pray, pray, pray. Prayer is powerful. May God look over her and bring her back. Love you guys!

  112. Song for sweet bella girl! It's just a really nice toon and the theme is don't give up, you are loved. Thought it fit her.

    This goes for all of you. Don't give up, you are loved!

    Dearest lord may you wrap angelique, tim, ali and baby bella in your warm and loving embrace. help them feel your presence and know that with you all things are possible. Please let your spirit guide the doctors and nurses in there decisions and treatment today that they shall see the best path to helping this sweet little girl return to health. Amen.

    Karen from Arizona.

  113. Link was broken

  114. Good night,
    I am another "anonymous" that visit your page everyday. My name is Sandra and I came from the Azores (Portugal). I found your blog just by change but now I come everyday to see if Bella is doing better. During the day I find myself sometimes thinking about Bella and I pray for her at night.
    I wish you the best and will keep Bella in my thoughts and prayers.

  115. Dearest Family -
    I have been following you for many months - even while on vacation, as I now am. I pray for you constantly (hourly it seems) with prayers to the Father for your safety in this journey you are undertaking. I pray that you always remember that God created everything then, I believe, set up the laws of Nature to handle his creation. He weeps with you in times of adversity and dances with you in your victories.

    My first born was given very slim odds of survival at birth but is now a healthy 36yr old. The road was sooooo rough with many HUGH dips but today all is well. God is good. I accepted my powerlessness back then and continue to thrive in that attitude.

    Miss Bella - your spirit is a wonder and you are such a powerful teacher. As a retired NICU RN I must tell you how you have amazed me daily and how deeply I love and admire you. God gave you parents and sister with beautiful spirits to match yours and I promise I will continue my prayer for your recovery.

    Amarillo, Texas

  116. Hey Bella. I'm Patrice, mom to Baby Jonah, who also has EB and is also a little fighter. I just want you to know that what you are going through now is so hard and not fair, but you keep fighting. One, because we want to show all those doctors and all the people who love you all over the world that miracles still happen and THERE IS ALWAYS HOPE and two, because you are giving all the EB Babies of the world hope and a chance at a brighter future. You are amazing, Sweet Bella. We hold you constantly in our hearts and prayers. Jonah says, "Hi" and also "Hey Baby, can I get your number?" So get better already. He's ready for your first date!

  117. Bella,

    in a recent post you daddy asked us what we get out of reading about you every day.. My honest answer is that I first came across your story one late night while at work by accident & after seeing a pic I was instantly wondering what had happened to you. As I read on I came to know that nothing "Happened" but that you were born with a rare condition & I felt sorry for both you & your family :(

    What keeps me reading everyday is the fact that your story is one of great strenght & love!! You are a STRONG little girl!!! You have a family who LOVES you & believes in you more than anything.

    I love how your dad says one day you will look back & say " I was born with EB but when I came out of the hospital I was cured"

    I pray every day for that & I hope that some day when all of this is behind you that you can look back & see just how much you are loved, not just by your family & friends but by people all over the world.

    Love & Prayers all the way from Yarmouth Nova Scotai xoxox,


  118. I am a recent Ph.D. grad in bioengineering and I have to admit that I started reading your blog because of the science behind it...but I have continued to read (and now respond) to help you keep FIGHTING!!

    10 years ago I got on a plane from college to say goodbye to my mother who had gone into complete liver failure and had not recognized anyone for I prepared myself for her to not recognize me when I walked into her room...she looked at me and said 'What are you doing here?...You're supposed to be at school" SHE WAS AWAKE AND KNEW ME (and that I was supposed to be 2 states away)!! And it was EASTER!! Days later she was blessed with a liver transplant and is going strong 10 years later.

    I know that Bella is too young to speak with words, but she will awaken from this latest set back, look at you and 'say' "Why do you look so tired & worried, I'm feeling fine?!"

    Keep FIGHTING the M.Ds and others that doubt, they don't call it medical 'PRACTICE' for nothing!! Keep them thinking and fighting with you!

  119. Hi Bella and mum and dad!

    I read your blog all the way from Sweden, north Scandinavia, as I am a friend of Elly's (a girl with jeb here in Sweden) and her mummy Emelie always reads your blog.

    I just want to give you and your family loads and loads of energy in this tough period of time, and I hope from the bottom of my heart that all will go well recovering from the transplant. Your parents are so so strong, and if I could hug them I would. Over and over again. And if I could be by your side to give you energy of any kind, I definitely would! You are such a wonderful child, keep fighting!!!

    Love and thoughts always,

  120. Hi Bella! My name is Nancy and I live in Washington. I'm the mommy of 10 children that I love very much. I know your Mommy and Daddy love you very much too. I read about you every day because I know how important it is to pray for you, I pray for you all during the day while I take care of my own children and am thankful for something I never thought much about before, skin. You've made me thankful for little things that I tend to take for granted and I think about you often. I know that Jesus loves you and that He is watching over you and am so glad your Mommy and Daddy trust Him with your life. Hang in there Bella! Someday you'll say how you were born with this rare skin condition but it's all better now. You've got a great Mommy and Daddy and big sister.

  121. Hi sweet Bella! I'm Miss Tiffany and just found your story today. I wanted to stop by and send your family hugs from Ohio! May God surround you all with His unending love!

  122. I have been visiting your blog daily since early July, but this is the first time I've ever responded. The strength that you and your family and Bella exhibit is so inspirational, and it is the reason that I visit every day. I wept today as I read your recount of yesterday's medical rounds. As a parent myself I can only imagine the grief and pain that you felt as you were left alone with your beautiful daughter to process the comments made by the doctor. However, as I continued to read your post, I found myself smiling when I read of your resolve to find a solution and of your faith in God. Bella certainly could not have a better advocate than you.

    Prayers to you all from Missouri.

  123. This is my first time to comment, so I suppose that I am officially de-lurking! I've been following Bella's journey since the very beginning of this blog. She captivates me. This blog is the first one that I check whenever I get on the internet. Your faith amazes me. It helps me to remember that it's okay to turn over ALL of my struggles to God, whether they are as itty-bitty as my next test in science or adjusting to my dad's marriage. I pray for Bella all the time. Everytime I pray, something always just whispers, "Don't forget Bella," even if it is just a quick prayer before a quiz.
    This blog is truly amazing. How dedicated you are to Bella is AMAZING.

    My best wishes, hopes, and prayers to you, Angelique, Ali, and of course Bella!

    Hugs, Savi

  124. Dear Bella and family,

    I have been reading your blog each day to see how you are doing. I read first thing each morning at 5:00am. I find myself thinking about how you are doing during the day and I will send you my prayers. There are so many people who love you and have not given up on you. Get well baby girl! I believe in miracles! You and your family are an inspiration.

    You are in my nightly and daily prayers.


  125. Dear Sweet Bella,
    Your Dad and I grew up together back east...he is a really great friend and, as you already know, a super Dad! Our prayers for you have been daily and multiple, your strength and resiliency are are one special little girl! Help is on it's, keep fighting Bella! I know you will, competitiveness and the 'the will to win' are inherited traits, trust me...I know! :)
    We Love you!
    Doug, Heather,and Alex Gleason
    Flower Mound, TX

  126. Dear Bella-
    My name is Mary and I am a nurse in the midwest United States. I have been following your journey for about 2 months now. I previously worked in dialysis and now work in PICU. You and your family have taught me so much about keeping hope and the absolute tenacity of life. I have never taken care of a child with EB, but I ever do it will be with your family in mind. They have taught me more about your rare disease than I could ever learn from any book, not just about EB but what it is like to be a family going through the BMT process and fighting so hard for you. I have hope that you will make it through this and it will become a trial that you have overcome. I check in each day to see how you are doing. Be strong little Bella, you are amazing!

  127. Sweet Bella, You are a strong little girl and i have faith that you will beat this. I've been praying quietly for a while, but hearing that the comments are helping definitely makes me want to comment! Your daddy is fighting so hard for you and I love to hear that you're fighting with him! Show those doctors who's in charge! (hint: it's God- not them!)
    ~abby in texas

  128. Bella and Family-
    I found your blog about 3 months ago when I came across Daylons blog. I check your blog every night just to see how your doing. I get tears in my eyes on your bad days, and a big smile on your good days. I think of you and your friend Daylon everynight and send special prayers and thougths to you and your family before closing my eyes for the night. I know that you are going to start getting stronger very soon. I know that your daddy and mommy are fighting for you, and I know that your fighting just as hard for not only yourself but for your mommy, daddy and your big sister. Keep giving it all you have and show those doctors that you are going to proove them wrong and beat the odds. You are going to go home a new strong, happy, healthy, beautiful little girl!!!!
    Lots and lots of prayers to you and your family,
    Jamie F.
    Milwaukee Wi

  129. Bella...fight sweet baby, fight. You have so many people that care for you and love you...keep on fighting baby. I pray for you, Bella, throughout my day. When I am doing laundry, when I think about getting on the computer, when I pull a soda tab off to add to my collection and of course right before bed. You are never far from my thoughts and always in my heart. XOXOXO sweet baby.

    Tim & Ang...Kick any dr that doesnt believe that Bella is going to make it to the curb (honestly wish you could do this). You only have room for those drs and nurses that do believe and have hope that Bella is going to turn things around. Because she will. She only needs positive energy not negative! Hmmm, maybe thats why she "looked" so good when you read. She felt the positive energy. Stay strong and continue being the voice of Bella. You are the best parents for this little girl. Some parents would just accept what the dr said and admit defeat but you will not and for that Bella is so lucky to have you as her mommy and daddy.

    As I read your blog the emotion of it all hit me. It made me feel ill and start crying. To think no one told you that diagnosis before today. But then the hope at the end of your blog renewed my hope. You are so blessed you have Dr Wagner on Bellas side too. He has NOT given up on "our" (I hope it is ok I call her that because I do love your sweet baby too) girl and I will not either.

    Denise WI

  130. My Dearest Bella,
    I remember the first day we met, before your mommy, daddy or I had ever heard of Epidermolysis Bullosa. I remember getting report that day in the NICU, and I remember how afraid I was of the 12 hours that lay ahead of me. When people ask why I became a NICU nurse, all I can usually get out was "I just knew." The truth is my Grandma was everything to me and she passed away the month before I started nursing school. Before that I had never considered NICU, but with my Grandma's spirit, and her love of babies with me... it was the only option to be a NICU nurse. When I first saw you, I felt my Grandma's warmth, she wanted the best for you and she would be with us the whole time. You have changed me as a nurse and a person Bella, you have made me better, stronger, smarter, more creative, flexible and humble. You have done the same for so many people. Thank you for choosing to touch our lives Bella. Thank you.

    Nurse Tanya

  131. I think you are the most amazing parents in the whole world! I pray for Bella every night!
    Humboldt, IA

  132. The goal of saline and vasopressors administered should NOT be to restore a “normal” blood pressure but to maintain it at a minimal level sufficient to avoid permanent damage to vital organs.

    Two SCLS experts available: in the United States,
    Dr. Philip R. Greipp,
    Professor of Medicine and Laboratory Medicine and Pathology, Mayo Clinic College of Medicine, Rochester, Minnesota,
    tel. 507 284-9094,

    in Europe, Dr. Zahir Amoura, Département de Médicine Interne, Hospitalier Pitié-Salpêtrière, Paris, tel. 0142-17- 8001 or 8003, email


    Systemic Capillary Leak Syndrome is diagnosed based on symptoms and the presence of an unusual protein called a Monoclonal Gammopathy of Unknown Significance (MGUS) in most patients. Symptoms for diagnosis are hypotension, hemoconcentration, hypualbuminemia and the presence of the MGUS.

    Diagnostic Tests

    • Elevated hemoglobin due to hemoconcentration (can be > 20 gm/dl).

    • Decreased serum albumin.

    • Increase in creatine kinase (CPK) levels, with marked edema and compartment syndrome.

    • Although creatinine may increase, overt renal failure is not common.

    • Chest X-ray may show fluid retention, but lungs are relatively spared except as a result of overaggressive hydration.

    Lab test for hemoconcentration
    Portable, instantaneous test for hemoconcentration

    Disorder Treatments

    • Methylprednisolone 125 mg IV STAT, repeated as needed.

    • Judicious use of IVF boluses and drips to keep CVP above zero.

    • Phenylephrine or Norepinephrine for hypotension, early institution.

    • 50 ml of 25% albumin, repeated as needed.

    • Continuous CVP monitoring, stat and serial lab work including CPK and lactate.

    • Immediate Orthopedics consult and compartment pressure measurement; early, preventive limb fasciotomies if compartment pressures or CPK high.

    • Venous Doppler for DVT, may need full anticoagulation.

    Treatment of a fully developed SCLS episode requires recognition that there are two phases. The first phase, which often lasts a couple of days, is called the resuscitation phase because the dual aim of ER/ICU treatment is to stop or control the capillary leak and to raise the patient’s blood pressure from near zero.

    In this initial phase, an albumin and fluid leak from the capillaries into the tissue spaces causes swelling, especially into the extremities rather than the abdomen or organs (such as the lungs). The blood pressure falls and the red cells concentrate. This loss of fluid has similar effects on the circulation as dehydration, slowing both the flow of oxygen carrying blood to tissues and the output of urine.

    Glucocorticoids (steroids like methylprednisolone) are recommended to reduce or stop the capillary leak, and albumin and colloids usually help to increase the remaining blood flow to vital organs like the kidneys. Keeping up with the fluid loss is important because sustained low blood pressure can damage vital organs such as the kidneys.

    Even though blood pressure readings may reach and remain at very low levels, it is important to avoid overly aggressive intravenous fluid administration causing massive swelling of the extremities. The goal of saline and vasopressors administered should NOT be to restore a “normal” blood pressure (or urine flow), but to maintain it at a minimal level sufficient to avoid permanent damage to vital organs.

    Measurement of central venous or arterial pressure in an ICU setting is often necessary to achieve this delicate balance. When too much fluid is administered, the result is excessive swelling

  133. Dear Ringgold Family,
    I read Bella's blog everyday. I am Praying so hard for Bella everyday. I pray the good Lord will heal her soon and set her on the road to full recovery.

    I was so upset reading about the new BMT Doc. He sounds like he needs a lesson in compassion and bed-side manner! What a jerk. Thank the Lord for a committed Dr. like Dr. Wagner, who is fighting for Bella.

    My cousin had a BMT for cancer, and it too, was awful. Lots and lots of complications, but she pulled through after several months of very dark times.....

    May you feel the love of all Bella's followers and be renewed daily. She is a child of God and HIS love and His care are hers forever!

    God Bless,
    Cyndy from SC

  134. Even though blood pressure readings may reach and remain at very low levels, it is important to avoid overly aggressive intravenous fluid administration causing massive swelling of the extremities. The goal of saline and vasopressors administered should NOT be to restore a “normal” blood pressure (or urine flow), but to maintain it at a minimal level sufficient to avoid permanent damage to vital organs.

    consult with the two SCLS experts available:

    in the United States,
    Dr. Philip R. Greipp,
    Professor of Medicine and Laboratory Medicine and Pathology,
    Mayo Clinic College of Medicine,
    Rochester, Minnesota, tel. 507 284-9094,

    in Europe, Dr. Zahir Amoura, Département de Médicine Interne, Hospitalier Pitié-Salpêtrière, Paris, tel. 0142-17- 8001 or 8003, email

  135. Bella, my name is Tina, I started following your story a few months ago. I have been following other EB children for a quite sometime now. I first learned of your condition because of a little boy named Jonah who also has EB, and than began following Tripp, Daylon, and you everyday. This is the first time I have ever commented on your page, but I just wanted to let you know baby girl that I think of you and pray for you and your family every single day. I have not given up on you, and even though I have never met you I have so much love for you. May God bless you sweet Bella.

  136. Being a parent that has had a baby go through bmt. I know how hard it is and can get. I have watched kids go from so sick the doctors them no chance at living and slowly they got better and those doctors ate those words. Bella will make them eat there words. They need to leave their negative energy at the door or not go in at al if they cant. Dont ever lost hope, dont lever lose faith and most importantly dont give up on Bella. She can feel the same things you are feeling right now so stay upbeat and you will see she will heal. This may happen alot slower then you would like but it will happen. I was always told in the BMT rollercoaster slow and steady wins th race. Prayers always.
    Jeannine Ursillo Wilmington, DE

  137. Well I have to admit, I'm more of a blog lurker (which sounds creepy, though I promise I'm not. :) ) than a commenter, but here goes. Let's see--less important stuff first. I think I found your blog from Tripp's, who was found from Jonah, who was found from Stellan, who was found from Nate Lawrenson, who was found from ?? I have four kids of my own ages 11,10,5,4. So as a parent with a hurting child, I can totally relate, but with what you go through on a daily basis, I can't even imagine. Your grace in which you handle the trials being sent your way, just amazes & inspires me. Parents of children with EB truly are real-life guardian angels & Bella is so incredibly lucky to have you guys for her parents. There is a reason God has chosen you to care for Bella...because he absolutely knew you could do it. I firmly believe God will never give you more than you can handle, although he does seem to "test" us sometimes. :) My two oldest had febrile seizures up to the age of 4. The doctors would tell me the seizures were harmless, but watching my babies have one was one of the hardest & scariest things to see. My 2nd oldest caught the flu when he was 7 & it caused his throat to swell shut--having Lifestar (air ambulance)land in my backyard was definitely the scariest thing I've had to endure as a parent. & then that same child had a leg-lengthening procedure when he was 9 to try & correct a birth defect. So while relatively minor in comparison to what you guys are dealing with & other parents with other health concerns of their children, I can only imagine your frusterations & concerns that you have, as I know what I had with my own. I hope you understand what all that gibberish meant. lol It is hard for me to put into words on a computer exactly what I mean.
    I seem to find myself drawn to blogs that involve children's health issues. I'm not sure if it's my love for medicine, learning about something I never even knew existed, the strength of the parents in sometimes dire situations, or what exactly. Sometimes I sit & ponder "why am I reading this?" Not because I don't find the story interesting, but more as to why I'm drawn to these blogs. But I pray for Bella, Daylon, Jonah, Tripp & all the other kiddos who are fighting a health issue on a daily basis. Hoping that my prayers will help. EB was something I had never even heard of until I stumbled upon Jonah's blog & I now I'm very much wishing for a cure for this disease. I pray every night for a cure & for the transplant to take. I pray every night for Bella & as many other have said, anxiously await your post on how she is doing that day. Praying every day that today is better than the last. I totally appreciate you keeping us all informed of Bella's condition. You guys are AMAZING!! I hope this made at least partial sense. I am so not good at putting my thoughts/feelings into writing. Many, many, many prayers being sent your way!! May every day be better than the last & soon Bella will be well!!
    Brenda from Kansas

  138. I am a pediatric nurse, and began to follow your journey through the world of cutting edge therapy. I have stayed, because I have fallen for this amazing little girl, and her family. You can do this Bella, stay strong.

  139. granulocyte colony-stimulating factor (G-CSF)-induced capillary leak syndrome (CLS)

  140. I read your blog almost every day because my friend and yours Sara (whose's doing the CHOC walk in Bella's honor) is such a loyal supporter of yours. I usually start writing a comment and then erase it because I feel like I don't have anything profound to say. All I can say is that your family and especially Bella are the most determined,strong, faithful and loving people I have ever heard of. Her strength and your is inspiring! I believe, like you God is the only one who is in charge and he hasn't given up yet and that's why Bella and your family haven't either. I pray for Bella and your family every night. I pray for continued strength. I pray that those who are taking care for her believe that she will get better day by day and there will be a miracle.Just like your family and all of us do.

    Jennifer-Chino Hills,CA

  141. Whoa! Here I am again! Know all those hits you get on your site? Count 10-12 of those as me, because that's about how many times I check in throughout the day anticipating the next update. I catch it first thing in the morning, but can't help be come back, reread, hope for THE entry...that something has kicked in.

    Anyway, very interesting that Dr. Doom is the same fella that was all uptight because this VEGF was "his" idea.

    Anyway, I'm sorry you've had to encounter staff that is less than enthusiastic. I'm not trying to make excuses of them, please understand that; but, doctors are human. Sometimes we think they should do "something" when nothing can be done. Sometimes they are wrong when they think "nothing" can be done. Certainly he needs to gain some interpersonal skills, but I'm going to give this fella the benefit of the doubt since he's in on this VEGF treatment. How exciting is it to hear about this?! I even looked it up to see what it is and it's effectiveness. Keep Bella comfortable. Get all the rest you can. Be prepared for some really exciting events! I'm very anxious to see how things go this next week. Change is in the wind :-)

  142. Dear Precious Bella,

    My name is Megan, and I am a Mommy to two beautiful children in central PA. I know it's no accident that I stumbled onto your Daddy's blog when I was reading about Jonah one day. You and your family have been laid on my heart so many times, in so many different ways over the course of your transplant. I find myself praying for you all the time.

    Everytime I get frustrated with the little things my children do to make me crazy, I remember how your Mommy and Daddy long to have those moments with you. And then I pray that you'll be up, making mischief with your sister very very soon.

    When my kids get a little sniffle or a fever and I get so worried that I don't know what to do, I think about you and the other kids there and say a prayer that you'll have a really good day.

    When I have a good day, I pray that yours will be better. And when I have a bad one, I pray that yours will be as good as mine was bad.

    Be strong, Bella. And keep fighting. I know how much God loves you and I know He'll see you through this.

    Sending love and prayers your way from Milton, PA...

    Megan Dugan and family

  143. I have been and will continue to pray to the One who loves you, Bella, more than anyone! I found out about you from Jonah's site, and have been praying for you since just before you went into transplant. Thanks you for being such an inspiration to me, Bella, and let your mom, dad, and sister know that I am praying for them too.

    Nancy in Colorado

  144. Dear Tim,
    I hope that the day went well today! I am only posting here for the second time (just posted a few days ago). It truly blows me away how many people are inspired by you, your family, and sweet Bella! It doesn't surprise me, just astounds me. I believe that you all are making a small change in this world where people don't seem to care about one another anymore. Well actually a big change, it's kind of like pay it forward, you all are affecting so many people to treat each other better, we read your blog each night or morning and in turn it teaches us to treat all that we come into contact with with more respect and kindness. I have said before that you have made such a difference in my life Bella! You are such a fighter. All your life you have endured pain and adversity and seeing your videos you still seem so happy. Tim you are also amazing! You are a great daddy. Like many others have said seeing the hardships that you are going it makes us all appreciate and not take our lives for granite, but it is so much more than that. I have a hard time explaining myself, all I know is that you and your sweet girl have changed me. Seems amazing that this can happen when you've never even met. I am so proud of you guys for really keeping up with the Dr's As a nurse I know that they can sometimes be so terrible like the new BMT dr. was today. But just you being you, it will change them too. Deep down I know that he will think of his attitude with you today and it WILL change him, maybe not right away but it will. YOu are inspiring all medical professionals to view their patients as individuals, and this will spread throughout the medical community. My 2 little ones and I play outside alot and we are always seeing butterflies and it always makes me smile and think of Bella and say a prayer for her. I pray that Bella begins to heal rapidly. I am sorry this is so all over the place, its difficult to express to many powerful emotions! Thank you to you all (Bella, Tim, Ang, and Ali). By the way Ali is so adorable too, she seems to have such a great personality so vibrant and alive what a brave little girl you have there too! You can see the love your children have from you in there pictures! Thank you for changing and inspiring me!
    Jessie Atlanta GA

  145. Hi Bella, I read your blog everyday. Everytime throughout the day that I call my daughter by her nickname, BELLA, I think of you too! I learned about your amazing family through my friend, Sara Cooper. I love to see pictures of your fancy and fun socks. I love to see pictures of you! You are definitely a fighter!!!! All of my family (husband, son and daughter) have sat with me while I look through and read your story. We are all rooting for you, Little One. You can do this! Maybe one day, once you are home, there will be a big party for you and we will meet!
    I pray that the doctors that come through your door from today on will remember that you are a person and not a number! YOU ARE BELLA!!!!!
    Le Anne
    Riverside, CA

  146. My name is Lynsi and I am from Littleton Colorado. I have a 3 year old daughter and a baby boy due in 5 weeks. I visit your blog nightly to catch up on Bellas progress. I found the blod through jonahs blog. I am very interested in this disease, something I knew nothing about before I met someone who is now my friend her little girl passed away of EB I had no idea they were doing htese studies, so when I found your blog I was instantly captured. Not to mention the precious face behind it all. SO I guess I really come to check on Bella and learn about the condition and science behind the BMT. WHen I read of these struggles it reminds me my day of a screaming and tantrruming three year old wasnt so bad. There is a little girl fighting to survive and a family fighting for her. It makes me remember to not rush bedtime, give more hugs and kisses and to be more patient. Bella is obviously one strong little girl and I cant wait to read that she has made a complete recovery and will be heading home and the day when the EB is gone. Its amazing a little girl so young can bring together the hearts of so many. She is obviously a very special girl and fulfilling so much already in her little life. Thinking of you all!

  147. I know I already commented but I have to say...I just went and read some of the comments. WOW! They had me smiling then they had me crying. It is just so amazing what one little girl and her family have brought out of others. Then thinking about it I realize that these are just the people commenting. What about all the others that dont just amazes me. There is inspiration, anticipation, hope, faith wishes, prayers, inspiration, fight, admiration, positive thoughts, healing thoughts and love in these comments. My biggest hope is you really can feel all of the is coming at you from all directions. Wrap yourselves in the warmth of it.

    Denise WI

  148. WOW! You started something amazing here. I read the comments on your last post, as you suggested, and I had tears pouring down my face. I often cry while reading blogs about sick children, but the comments, not so much, typically. You brought out the best in people and got us all to open our hearts to you. I had to stop and think to answer the question, Why do I come here and read? And I did answer the question in a comment yesterday, but it wasn't until I read the other comments that I really figured it all out- I come here because it makes my life richer, fuller, more full of love and appreciation. We (Bella's on line community) think about you as we go about our day, and it changes things for us.. a frustrating trip the hospital with your child for something minor and inconvient becomes a chance to stop and truly feel grateful for your healthy child.. studying for med school while you miss out on playing with your family suddenly becomes a small price to pay so that some day you can save the lives of children like Bella. You make us better. Bella makes us better people. Thank you for reaching out and bringing us all together. I'm grateful.
    Emily Monteer
    Ft Lauderdale, FL
    ps. I LOVE that you read the comments to Bella and that they give you strength and hope when the doctors don't.

  149. hi Tim and fam. I try to visit Bella's site every night before I go to sleep. She is very close in age to my little boy J. The site has been a great place for faith and positive thoughts over the last year while my wife and I have been out of work. After 11 months of being unemployed and sending out 500+ apps, my old work called and offered my job back. ...I could have never conceived that something like that could happen. I'm hoping something remarkable happens with Bella's recovery too that is completely unexpected. She is a fighter and you all are doing a great job helping her. Russ F.

  150. Thank you for reading our words to Bella. I am honored that my words rang in her ears.
    My prayers are with your family and the Doctors and Nurses caring for Bella.
    We are praying for her.

    Cheryl from Utah

  151. What an amazing day! Stay strong in God!
    Praying for Bella in Michigan!

    Beth H

  152. I found out about Bella through Daylon, who is my best friend's nephew. I started reading your blog MONTHS ago, long before either of them actually had the BMT. I try to catch up at least weekly on both babies...and pop in on other EB blogs too.
    I am currently living in Pápa, Hungary, and I look forward to reading the good news, as much as the heartbreak that often accompanies it tears at me.
    Thank you for your faith and determination--it makes every other challenge in the world seem so insignificant, If you and Bella can accomplish all of the insurmountable challenges thrown at you, NOTHING is impossible.
    --Heather in Hungary

  153. Dear Bella,

    You are such a popular little girl!!! Not only are we sending you all of our happy and postive thoughts from across the pond to you, all of our friends can't stop asking, thinking and praying for you as well.
    There is nothing that l love to see more, than those absolutely beautiful blue eyes when you get to open them, So stay strong my darling and keep showing us those beauties.
    With the warmest hugs and kisses,
    Your Auntie Tracy

  154. Hey Bella,

    It's your cousin Jake, all the way over here in Madrid. Your'e doing really well. I can't wait until you get out and I can play with you and your sister, Ali.

    Lots of love, your cousin Jake

  155. Hi Bella -

    Your mommy is my boss. Knowing about you and the stuggle you're going through right now really puts my job in perspective. I thank God for every normal, boring, or even stressful workday, and I pray for a time very soon when your mommy can finish her workday and come home (to her own house) to a new "normal" evening with a healthy you, Ali and your daddy. You have a very special, strong mommy who is pulling off what a lot of mommies couldn't under the same circumstances. You have that same strength in you too. The strength to make it to that healthy normal that many of us take for granted until special families like yours enter our lives to remind us how blessed we are.

    Angela Ulrich
    Dublin, Ohio