Wednesday, June 17, 2009

Chart the Course

At least, I think it's the 17th. I'm pretty sure it's Wednesday right now also.

We found out yesterday part of the biopsy results. "There was an absence of collagen VII in the immunomapping..." Dr. Metz rambled on. "Collagen VII connects the dermis to the epidermis," she went on to say. "This indicates that Bella has the Dystrophic form of EB."

My heart just dropped into my gut and my arms got cold.

"They weren't able to determine subtype do to some [blah blah blah] so they are redoing the second test and I'll let you know what it is either when I see you next Tuesday or before."


So, now the hunt for the next clinical trial of bone marrow stem cells takes place. In the mean time, there is another piece of the story that unfolded so fast, that I still am unsure it even happened.

As I sat in the dentist office two days ago awaiting an emergency crown, I called my friend Joe Polish, a close friend and marketing guru, to vent a little. Joe realized he was in over his head, that he had never been through anything like this, so he said, "I'm gonna put you in touch with someone who can better talk to you right now. His name is Sean Stephenson. I interviewed him recently and we've become great friends. Sean has a rare bone disease that left him with 200 fractures by the time he was 18. He's 3 feet tall. He's now a motivational speaker and Psychologist. Can you hold? I'll try to 3-way him in on the call."

As the nurse stands in the doorway waiting for me, I am introduced to Sean by Joe during taping of an A&E special they are doing on him right now. Sean gives me his cell number and says, "Any friend of Joe's is a friend of mine, and if there's anything I can do to bring peace, I will."

3 hours later, I come home from the dentist and hunker down for another long mostly sleepless night with a colicky baby wrapped in bandages.

The next morning (yesterday), I get a text from Joe "Did you call Sean?" I hadn't. It's too tough to make a single phone call right now at night. So, I call Sean on the way home from dropping Ali off at daycare.

We spend the next 45 minutes in an extraordinary conversation about what is at stake, who to BE in the face of this, and what there is to do. Sean says, "Don't listen to the Doctors, I was supposed to only live 24 hours." He follows with, "The only prognosis I listen to is the one I like!!" At this point, I still don't even know Sean's last name, when Joe said it, it went right by. I just had a hand scribbled name "Sean" and a phone number to call. Sean tells me that he wants to put me in touch with his Doctor, a microbiologist by the name of Robert Young. Sean started seeing Dr. Young about 5 years ago, and he hasn't broken a bone since. Not bad for someone who broke over 200 during the first 18 years of life. Sean said he'd let me go so he could call Dr. Young for me. A minute later, (10:04 to be exact) Sean calls back and says, "Dr. young is in London right now, but he said if you call him at this number in exactly 30 minutes, he will take your call."

It was during that 30 minute wait that Dr. Metz called me with the bad news. Without getting dramatic about it, we were hoping maybe Bella had the simplex version of EB which should could most likely grow out of. If it turns out to be Recessive Dystrophic EB (RDEB), it is fatal with subjects dying from malnutrition due to the erosion of the esophagus, infection from open wounds and/or resistance to antibiotics, or an aggressive skin cancer that usually comes in during adolescence. Most RDEB kids to live to adulthood.

So, at 10:34, I call the number and a man picks up the phone. It's Dr. Young. I explain who I am and he asks me to tell him what's going on with my daughter. Dr. Young is clearly a renegade. Within the first two sentences, he says, "Don't listen to the doctors. They don't have a clue. Here's what you need to do, you need to strengthen your daughter's blood. You strengthen her blood you strengthen her skin. Mom needs lots of green juices and get off sugar. Sugar is poison."

He then goes on to give me specific sprays he produces that he says will help Bella's mouth and skin be more blister resistant. He would like to see her blood tests results and any panels that have been done.

10:48. What just happened?

Other news:

Yesterday Ang and I were faced with doing Bella's wound care all by ourselves. Bella was awake and crabby, and we just didn't know how we were going to pull it off, but we were literally running out of time before we had to go pick up Ali so we just went for it. Well, all I can say is that Bella is freakishly strong, and not just muscularly, but constitutionally. She was a trooper. I also want to publicly thank the angel that was in the room with us. I don't who it was, but Ang and I were not alone, and Bella was somehow calm and soothed the whole time. (She went right back to screaming her head off 5 minutes later). At the end of the procedure, I felt closer to Angelique than ever before.

Total time of procedure? 50 minutes.

So, in all this there is ups and downs, Bella sleeps all morning while we run around trying to keep the house/ laundry / bills / paperwork / research / pumping / feeding up to speed, then turns at 8 pm into the most irritated, upset little girl who can't be put down for more than 5 minutes till about 4 am.

We know of the clinical trials at U of M and Stanford. There is also one at Rady's in San Diego where I interned and I am looking into that today. Now that we know the main subtype of EB, we can navigate what options there are. Really, until these bone marrow stem cell transplants occurred, all there was to do is bandage and love your kid and keep 'em as comfortable as possible for however long God intended them to be here. Now, with this new breakthrough, there is hope for a tomorrow beyond unending discomfort.


One day, Bella will look back and say, "Yeah, when I was born, I had this rare skin condition, but when they took me home from the hospital, it went away."

The body IS a miracle. It does miraculous things every day. It defies "the experts" every day. God has the power to produce all the collagen VII God wants. It is to be His will. Sean told me yesterday, "Pray for a miracle. You HAVE TO CHART A COURSE. God may come and adjust the winds on you, but you HAVE to at least CHART the course."

Thank you all for helping my family "CHART THE COURSE."



  1. Comments from Care Pages Site:

    Posted Jun 21, 2009 9:57am
    by Susie Burgess

    Hello - I am thinking of you all and sending up prayers for Bella. Susie
    Posted Jun 20, 2009 2:11am
    by Barbara Reuer

    My thoughts and prayers are with you daily. It's all about the people that you meet and the opportunities you take to "engage". God's speed and blessings. blr
    Posted Jun 18, 2009 6:50pm
    by Angela Ostermann

    I am Angela Ostemann's sister and I WILL PRAY WITH YOU! Your little blessing is there for a reason, a reason you are her parents and a reason for all of this...My heart goes out to you.
    Posted Jun 18, 2009 3:36pm
    by Jose Alfredo Martinez


    My heart is out to you, especially Bella! She is in my prayers along with you and your family. God has powerful ways and it is no coincidence you are surrounded yourself by great people such Dr. Young and Sean Stephenson who refuse to give up hope! Hope is the one thing you can hold on to at this point. You’ve got to believe it is possible, even when the odds are against you!

    Jesus looked at them and said, “With man this is impossible, but with God all things are possible.” - Matthew 19:24-26
    Posted Jun 18, 2009 9:23am
    by terri wiener

    Holding the vision and chart the course...holding the vision and chart the course....holding the vision and chart the course.
    Love to you all
    Posted Jun 18, 2009 6:18am
    by Jan Pflaum

    Angi and Tim, We are so sorry for the news regarding your little angel. Not good but not something prayer can't change. I am so sad for your family, we only wish there is something we can do, all we do and continue to do is pray for Bella............. When I first looked at her I somehow knew she was going to be a real fighter, I told Bill this on the way home. It was just a feeling I had......I believe she will definately be one of those strong and couragious little girls. It has to be so very difficult for both of you to see this darling child hurting. Isn't it totally amazing how children are so very strong, it is the parents, grandparents,etc who have the most difficult time. Somehow I relate this to babies that are so fresh from God. God has worked wonders in my life and I know He can work miracles for your need that right now. Much love Uncle Bill and Jan
    Posted Jun 18, 2009 3:15am
    by Michael Cassens

    We love you all dearly and are sending all the positive energy we are able to you. You are all strong and you will survive. I believe that with everything that I am.

    Also, Pete gave me a copy of the video he took from Zoe's birthday party. We watched it tonight and Ali was having such a fun and wonderful time... it is a must see for you. I will bring it over to you when it fits your schedule (and I can bring some Wahoo's too if that is desired... and I know it probably is...)

    Posted Jun 18, 2009 1:10am
    by Russ Baldwin

    Celeste says a prayer for Annabella everyday. I have our mens bible study praying for her also. We will increase the circle as much as we can, keeping all of you in our prayers.
    Love & Prayers
    Russ & Jen
    Posted Jun 17, 2009 11:05pm
    by lauren hicks

    Still praying...Know that you have my thoughts and support. I know that there is little that I can do, but if you come up with ANYTHING please don't hesitate...Lauren Hicks
    Posted Jun 17, 2009 10:55pm
    by Cathy O'Neil

    I'm all about charting!!!
    Love to all of you!!!
    Posted Jun 17, 2009 8:53pm
    by Olivia Swedberg

    Praying for you and with you- Tim and Angelique, you are amazing! Stay strong.

    Posted Jun 17, 2009 7:52pm
    by Doug Gleason

    we are praying daily...we love you all.
    Posted Jun 17, 2009 7:21pm
    by Lacy Jane Vanderboom

    God has gifted you, Ang, and Ali with Bella to strengthen your relationships with one another and to draw you closer to Him.
    The outcome of your open hearts, is and will continue to be Love.
    My prayers will be directed towards your continued strength and the Love that generates around your family for Bellas continued growth.
    We love you!

  2. More from Care Pages:

    Posted Jun 17, 2009 7:02pm
    by Paul Ringgold

    I would definitely put little stock in what our FDA driven doctors tell you and hone in on naturopathic doctors and alternative medicine. I'd also widen your scope to outside of the US for clinics or Butterfly Children organizations outside of the US.

    You all are in our prayers and thoughts.

    Love, Paul, Heike, Helga and Liesel
    Posted Jun 17, 2009 6:52pm
    by MB Young

    We'll hold onto the vision. And hold on and hold on...
    Posted Jun 17, 2009 6:33pm
    by Sheila Marchetta

    I just talked to Paul, who reminded me of what the doctors told Tracy about Harrison. That he wouldn't survive babyhood. I was with Harrison, age 8, just 3 weeks ago. He is happy, healthy and hardy. His back has been corrected/healed, and is no longer a threat.
    So, the doctors aren't always right.
    I met a number of cancer patients, who after traditional medicine gave up, survived through alternative medical treatments.
    There are some Western trained doctors who will work with alternative methods.
    Also, Tracy and Jon pulled out all the stops and got all the support help possible.
    Bella is fortunate to have you and Ang, who will also not give up and explore and provide whatever help is available.
    And, I do believe that God will guide you and support you at this time.
    Love you all dearly,
    Posted Jun 17, 2009 5:42pm
    by Carolyn Rhinehart

    Angelique and Tim,

    The two of you are amazing and I know that God will get you through these trying times. Bella has blessed our family and has won my heart. Just remember that I am here if you need me. I love you,
    Posted Jun 17, 2009 5:04pm
    by Denise Dew

    Tim & Ang, there are no words that I can convey but know that in my daily prayers, your names are spoken. Stay strong, what else can you do?
    Posted Jun 17, 2009 2:15pm
    by Andrea Alderson

    Ang & family...

    I am absolutely amazed by your strength. Bella is blessed to have you battling for her on this incredibly mountainous journey. With all of the love and support Bella has around her, she WILL get through this. I am sending many prayers, hugs and positive affirmations to you across the miles from here in MD.

    - Andrea Alderson
    Posted Jun 17, 2009 1:52pm
    by Sheila Marchetta

    That is heartbreaking news from Dr. Metz. Thank God for the optimistic and hopeful input from Joe, Sean and Dr. Young. We will be praying with you for the miracle, and for continued strength for you and Ang. You two are working so hard and so well together. You are amazing!!!
    Love to you both, and to Ali and Bella
    Posted Jun 17, 2009 1:36pm
    by Lynne Boschee

    Present to the heartache, and also the miracles you've experienced in the past 24 hours. Praying for more miracles, for Bella to gain strength and to heal and for you to be held up by all the love that is out there for you.

  3. Part 3 From Care Pages:

    Posted Jun 17, 2009 1:29pm
    by douglas garrett

    Blessings to Bella and your family. Thank you for letting us know about the recent results and about your contact with Dr. Young. Not having any medical training or experience it still seems to me that what he said about strengthening her blood makes sense and certainly can't hurt with reasonable guidelines. And what he said about sugar is correct in my experience. Monday night on the News Hour they interviewed a doctor at Yale (I think it was Yale) who has written a new book on the overeating problem. His main point is how our food industry has contributed to increasing food addictions and health problems with the many different combinations of sugar, salt and fat that make certain foods so irrestable. I can personally attest that getting off sugar has cleared my head and given me more energy.There are many different ideas in our world about how to meet and work with a challenge. Tim and Ang, Bella has come to live and be guided by you. You can listen openly to all the advice and information that comes to you, prayerfully consider it all, and then decide what is the best course. Your friends and family, with the best intentions and wanting to help, will approve and disapprove of some of your decisions. But it's up to you. I know you will find the best course.

    Posted Jun 17, 2009 1:29pm
    by Amy Andrews

    Sending love ... sending love... sending love.
    I've been dreaming about this Tim.

    If you need to stay here just say the word... we're close to Rady.
    Posted Jun 17, 2009 1:23pm
    by Albert Alva

    you're not alone
    Posted Jun 17, 2009 1:22pm
    by Richard Kelly

    Sounds like you got a chance to talk to a pretty amazing guy. Here's a article and photo to go with the voice:,0,976278.story

    Hoping the further biopsy news is as good as possible (Mild Dominant?).

    Posted Jun 17, 2009 1:18pm
    by Trazona Montague

    You guys have to be the strongest people I know. I know Bella is going to be all the better for having you and Ang has her parents. I believe Bella will get better. God is the maker of miracles. God Bless.

    Posted Jun 17, 2009 1:15pm
    by Bruce Swerdfeger

    Angelique & Tim,

    As I read your update I was immediately reminded of Romans 5:3-5 "Not only so, but we[a] also rejoice in our sufferings, because we know that suffering produces perseverance; 4perseverance, character; and character, hope. 5And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us."

    While I pray for miracle, I am comforted that we do have hope.

    Bruce Swerdfeger
    Posted Jun 17, 2009 1:11pm
    by Conde Rogers

    I am praying with you all. I am sending you an abundance of love and miracles.

    Posted Jun 17, 2009 1:10pm
    by Angela Ostermann

    Joe, Sean, and Dr. Metz are all angels God sent to protect and help Bella. I continue to intensely pray for all of you. I am just so sorry.. stay positive and don't let the moment slip away, relish in each one and keep the big picture in mind. Our hearts are with you.
    Posted Jun 17, 2009 1:09pm
    by Stacey Krsulic

    Sean sounds like a very smart and brave man. Sounds like he has the same disease my cousin has - she is about 3 feet tall, broken more bones than can be counted, BUT is a physical therapist and a mother of 2. Miracles do happen!! I want to stay hang in there, but that seems so trite, so empty. Know that you all are in the thoughts and prayers of everyone on the PDD team at VZW. All are sending as much positive energy as possible!