I am blessed to be the wife of a wonderful man and the mother to 5 beautiful children. Our youngest child, Daylon, was born with a rare genetic disease called, Epidermolysis Bullosa, or EB for short. According to his doctors, EB is the worst disease you've never heard of. Daylon has a misspelling in his DNA and his missing a link (or ingredient) in his skins make up. He is basically missing the roots that attach his skin to his body. A gentle kiss or touch can lift away the skin resulting in painful blisters and wounds equivalent to second or third degree burns. When Daylon was 3 weeks old, we got the test results back on the sub-type of EB that he has which is Junctional Herlitz. This form of EB is known to involve the eyes, lungs, mouth, stomach and GI tract and the urinary tract and in almost all cases, takes its victim's life within the first year of life. We were told that if he lived to be a year old, he wouldn't want to be alive.
Daylon's first birthday!
A huge milestone for a child not expected to live year.
Jennifer I want to thank you for such a wonderful, educational spotlight. What a beautiful, sweet little champ that Daylon is! And what an incredible big brother. Love to you and the whole family.
I was very excited to do a spotlight about EB since this was a disease I learned about almost 10 years ago through a friend who had done some fundraising for EB families. I saw first hand the pain and heartache this disease caused. Through all the spotlights I've done and all the conditions I've learned about, the ones that I truly think are the hardest are the ones that involve pain and suffering for young children. My heart really goes out to EB families. You can learn more about EB at Debra.org and Puckfund.org. You can read more about Daylon and his family here.