Raymond was born on 11/20/2006, and within seconds of birth, the doctors already knew he had EB. Raymond fought hard for his life the first three days he was alive. We were told to be prepared for the worst due to all the open wounds he had since he was prone to many infections, but with Gods grace my baby was screaming and kicking stronger then ever on day 3. Since that day we knew we had a fighter on our hands!
Raymond was eventually diagnosed with Recessive Dystrophic EB, and is now 6 1/2 yrs old and still fighting! Since 3/6/2009, Raymond has had numerous esophageal dilations, about every 6-8 weeks. Last year we were given the worst news yet – that his kidney was failing him due to an irregular bladder, all because of EB. He’s had 2 surgeries to correct it so far. On his 6th birthday, he came down with the worst illness ever to effect his body, which was c-diff colitis. He was in and out of the hospital for three months. Now today he’s stronger then ever and has started 1st grade!