Sunday, July 31, 2011

July 31, 2011: Giving It Up For Good!


It's official.  My 39th birthday is exactly one month from today, and I am giving it up for good.  When I first heard about giving up your birthday for a cause, I liked it.  So, yesterday Angelique asked me what I wanted to get for my birthday.  In one way, I can't get what I want (Bella back), and in another way, I am already getting far more than I could ask for (Julian's arrival), so the idea of being given anything other than that just seems trivial this year.

Here's how it works:  for anyone who is so inclined to do so, instead of getting me anything at all, make a donation to my Chipin widget on my blog.  Doesn't matter how big or small, either.  The money you donate will go (after chipin takes its 3%... we're working on how to get that covered as well) to PUCK, which means it will go to Drs. Wagner and Tolar at the U. of Minnesota to continue to finance their ground-breaking research in using stem cell transplants to treat EB.

I don't know if I've told you this, maybe it's just been a while...

Bella lived to Day +101 of her transplant.  The study was for 100 days.  She completed the study.  She held out.  Why?  Because on or within a day or two of Day +100, Dr. Tolar does another skin biopsy to see how much donor skin has grown in since day +60.  By holding out to Day +101, and dying then, Dr. Tolar got to do her biopsy during her autopsy...

What this means I cannot understate, and this might make those who are squeamish a little uneasy...

He was able to biopsy her throat.

You can't biopsy a living child with EB's throat, but as we know, EB affects the mouth, throat, esophagus, GI tract, the whole 9 yards.

Bella was growing Ali's skin in her throat... up to 24% of the skin was Ali's.

30% gets you functional skin.

There is no other treatment out there, folks, that is literally healing the kids from the inside out, and the GI issues are EVERY BIT a serious problem for an EB patient as any other wound.

THIS is what is unique about Minnesota.  THIS is why I believe they deserve as much funding as every other center has received to treat EB solely on the outside.  Other EB research centers have received tens of MILLIONS of dollars in EB research funding, and while that research is important, NONE of it has produced such a quantum leap in EB treatment.  Minnesota deserves their chance.

That is why I am giving up my birthday, for good.  Would you join in giving U of M their chance?  Just the cost of a card will do, if that's all you can contribute at this time.  Every dollar counts.  Thank you from the bottom of my heart, yet again, for stepping up and standing by our side in this journey!


In other news, if you haven't followed the roller coaster and miracle that has been baby Tripp's last two weeks, his amazing super-mom Courtney posted an update this morning that pretty much made it feel like I WAS in church today!  She posted two pictures that will curl your toes, so be warned, but they illustrate the DRAMATIC turn-a-round Tripp has experienced!  PLEASE GO see for yourself and make sure to send them some love with your comments!  CLICK HERE to check out her update.  


Last but not least, yesterday, we had the pleasure of being photographed by Jennifer Edling!  In addition to being Daylon's wonder-mom, Jennifer (as I'm sure you've noticed on her blog) is an awesome photographer!  She is launching a photography business and asked us if she could take some pregnancy photographs to build her portfolio... um, OKAY!

We went to Irvine Park nearby us and had a wonderful time, although it was a little warm!  We are blessed to have BOTH Jennifer AND Sara Cooper in our lives, chronicling this amazing journey we are on.  Sara is going to do delivery day hospital photos of the J-man, so stay tuned for more amazing pics!  Here are some of our favorites from yesterday, and I'll close with those.

We love you, we honor you, we thank you for being here with us still.

God night.


  1. i will cover the 3% taken out... let me know when you've reached a total and i will make a donation that is 3% of that total in addition to donating some of the money i got for my own birthday last week.

  2. And I too shall give up my birthday! It's not til next year but hey I can donate for this year and send more along as a birthday present for you!

    Such beautiful family pictures!!! They are all absolutely wonderful and I just love the one of Ali in the frame! Such a cool idea!

    Love the pic if Bella as well! I always love seeing that beautiful little butterfly girl!

    Best wishes

  3. Cool birthday idea! I had no idea that Dr. Tolar biopsied her throat. The results are amazing. I had so much fun with you guys yesterday! Thanks for the plug too, by the way! See you Saturday!

  4. Great Pictures! made me smile first thing this morning :D

  5. Lovely pictures, you truly have a beautiful family!

  6. I LOVE the photos, y'all. They are so beautiful and you look so happy. I can't wait to meet Mr. Julian. Have a great week!

  7. What a beautiful family. Just love the pictures. Jenn always takes the best photos I have ever seen.
    My favorite, the last one. I just love beautiful Bella's smile. Take care. Love and Peace Leah's Nana

  8. You bet we will!!!

    Those photos are sooo awesome, great job Jennifer! Wow! Could your family be anymore beautiful? The answer is no!!! I love them! Ang is looking stunning as always! And Bella couldn't look a bit sweeter in that picture.

    Much love.

  9. Beautiful pictures! Nicely done, Jennifer! I Love the black and white one so much!

    Love your birthday!

    Can't wait to see you. Excited and blessed to photograph and welcome Julian!

    Lots of love ...from Ohio (we've got rain, thunder, lightning, and hail as I type!)

  10. Those are the sweetest family and pregnancy photos ever! <3


  11. Love the photos, thanks for sharing!! Beautiful... Ang you look amazing. Can hardly wait to see the Julian photos. Bella's photo makes me want to pick her up and give her such a hug~ what a doll.

  12. What a beautiful family - inside and out! But please tell me who that teenager is and what happened to little Ali? She's looking so grown up! As always, however, the picture of Bella steals the show. What a doll!

    You guys look so happy and that makes us happy as well. Wishing you all the best as the time draws near for Julian's arrival.

    Take care, sweet family.

    A friend in NC

  13. I am so happy for your sweet family! I love Angelique's mommy pics! They makes me feel weepy. I know what it must mean to the three of you to have Julian join your family. Ali will be a great big sister to Julian as she has been to Bella.
    Angelique looks radiant and you guys deserve to be happy. The Lord is truly smiling down on your sweet family.

    Keep smiling.


  14. So interesting with the biopsy in Bellas throat! Wow!! And the pics are just wounderful... :)

    Regards from Jenny in Gotheburg, Sweden

  15. Beautiful pictures of a beautiful family.

  16. Happy early birthday! Your new photos are absolutely stunning. WOW. Much love to the Ringgold family.

  17. I just "chipped in" for your birthday. What a great way to honor Bella's journey. Happy Birthday!

  18. Beautiful, beautiful photos. Photots to cherish. The photo of always takes my breath away.

    Thinking of you all as you get closer to meeting Julian.

    Sending my love to all, kisses for Ali and belly rubs for Julian.

    Denise WI

  19. These are all so lovely!!! Best wishes and lots of prayers and good wishes to you all!!!

  20. Ooh, you are a handsome quintet!

    Lovely photos.



  21. Is there an address/PO Box I can send my "chip-in" birthday card directly to so you don't lose 3%?

    Thanks and Happy Birthday!


  22. I know this is a sensitive subject and if I've overstepped any boundary, I apologize. However, your mention of the biopsy of Bella's throat made me wonder . . . what other information did you find out via the autopsy? Was there anything else significant? Anything else that directly relates to care for EB kids who undergo transplants in the future?

    I'm so sorry that Bella had to go, but it's encouraging that she was able to contribute so much to the research of this terrible disease.