The link to Elle's blog was incorrect in my last post. Sorry! Try
www.sweetbabyelle.blogspot.com or click on her name to the right of the screen,under Daylon's EB friends.
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About Us
- Jennifer Edling
- Lake Elsinore, CA, United States
- We're Brian and Jennifer Edling and we have 5 beautiful kids: Keira,8; Caleb,6; Violet and Sadie, 5; and Daylon who turned 3 in July. Daylon was born with a rare disease called Epidermolysis Bullosa. His specific form of EB is Junctional Herlitz. When contact is made with his skin, it blisters and peels or sometimes rips right off. Unfortunately, his form of EB also affects his soft tissues (organs, throat, mouth, eyes etc.) giving most kids with his condition less than one year to live. Thanks to modern technology, there's a new clinical trial Bone Marrow Transplant at the University of Minnesota for severe forms of EB. On June 24, 2010 Daylon became their first JEB patient to undergo transplant. We're all so excited at the prospect of Daylon's improved life! This is the story of our sweet baby Daylon, and life with EB.
3 comments:
Hi Jennifer - I'm a friend of a friend of Bella's parents and became familiar with Daylon's blog through that. I'm so glad he's doing so much better!! Love that smile! I saw your post a day or two ago where you spoke of returning to CA, mentioned the scarcity of pediatric dialysis and your hope that CHOC did it. You probably have your answer by now, but just in case....
My daughter works at St. Josephs Hospital in Orange CA which is affiliated with CHOC directly across the street. I asked her to check into this and she has been told that CHOC does support pediatric dialysis, however it is performed at St. Josephs across the street. Normal referral/transfer process.
I hope this helps. I wish Daylon and your entire family all the best and will continue to keep you and all of the EB families in my prayers.
God Bless
Carol
Keeping you in prayer, I'm sure it is a tough time for all EB families, but especially for those going through the BMT. Love your family and continuing to pray for all of you.
Kim M
Waterford, MI
thanks for sharing this moment. i pray to daylon
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