Our son Luke was born on June 23rd, 2016, and we were smitten. He slept in my arms at the hospital that night, and everything seemed perfect. The next morning we awoke and he had blisters on his elbows, knees, ankles, fingers and mouth. The pediatrician had never seen anything like it, he went to do a little research and came back with a print out about EB. Luke was transferred to Rady Children’s in San Diego, where it was confirmed with a genetic test that he has recessive dystrophic epidermolysis bullosa or EB for short.
RDEB is a genetically inherited disease that takes 2 parents who are carriers of a recessive mutation of the collagen VII gene, a critical component for the 'glue' that holds your skin on your body. Luke can blister or have his skin sheer off from mild to moderate friction. Skin that has previously wounded or blistered is more sensitive and fragile than areas where no wounding has occurred.
Over the course of his first year of life, Luke has had blisters on his body that range in size from a pea to an orange. We have used 300+ sterile needles to lance blisters. He already has scarring, and has lost some toenails and fingernails. His Mom, Christina, is his primary care taker. Luke has to be wrapped in special bandages every other day to protect his fragile skin, and we have to spot check him daily for new blisters, incase he has one that needs to be lanced before the pressure from the fluid builds, sheering out his skin. His most problematic areas are his mouth, hands, forhead, and behind his ears. He also has a recurring wound on his chest.
Despite all of this, Luke is one of the happiest babies ever! He's curious and goofy. He cruises along the furniture and crawls all over the house getting into everything he can! He dances and claps and babbles, and makes a hilariously serious 'stink' face. Recently he learned how to play peak-a-boo too. Luke will be 1 year old on June 23rd, and all he wants for his birthday is to find a cure for EB. He has everything else a kid could want, toys, books, clothes and a loving family.
Please consider donating to TEAM Luke! We've appreciated the fantastic, loving support of all our friends and family this past year. Without all of the people who have reached out to us, I'm not sure where we'd be. It's been a hard year, but also one filled with a lot of joy. What keeps us going is hope. Please help give us some hope for the future for Luke, and all of the 'butterfly' children like him.