A Brief Examination Of The Skin Condition Dystrophic Epidermolysis Bullosa
A Brief Examination Of The Skin Condition Dystrophic Epidermolysis Bullosa
...through the menu on the digital cable guide I saw a program titled, The Boy Whose Skin Fell Off, filmed by TLC (The Learning Channel). With such an attention grabbing title I couldn't resist. It was a documentary that featured a young man named Jonny Kennedy. Jonny lived in the U.K and was diagnosed with Dystrophic Epidermolysis Bullosa as a young child. The severity of the condition was immediately apparent by the physical condition of the boy. Continuous pain and discomfort was quite obvious and his mother had to constantly care for him by taking care of his wounds and bandages. It took the boy's mother and a nurse to take care of him and the attention he needed was a 24 hour a day job. The devastation EB can have on not only the person suffering from it but the family is enormous. The severity of EB was summed up in one sentence when Jonny says at one point in the program that "he wishes he was never born." For me personally, the most moving thing about the story of this person was even though his health was declining and he knew roughly how long he had to live he didn't loath in pity but rather went out and did his best to experience life and make as many friends as he could. I was amazed at his sense of humor and the way he was able to joke around about the condition that would eventually kill him. He made me realize just how precious life is and how lucky I am. Despite his constant pain and lack of mobility Johnny campaigned to raise money to find a cure for EB right up until his death. The documentary he allowed TLC to film of the last months of his life has raised £500,000 and was voted as number six in the Fifty Greatest Documentaries as voted by industry professionals such as respected film makers and journalists.(debra.org.uk) He made it known just how strongly he wanted a cure for other's with his condition because himself and his family knew...
