We're heading to the hospital right now. Daylon is getting a G-tube put in at 7:30 tomorrow morning. Wish us luck.
Brian and Jenn
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I'm giving up my birthday for PUCK! To donate towards a cure, click here!
LAUGH
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.
2 comments:
Good luck!! You guys will be in my prayers. Kudos to your mom for putting on such a successful carnival. It was way fun!
Good luck! Call me as soon as you know something tomorrow!
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