- From the Debra website "EB - Epidermolysis Bullosa - is a genetic condition where the skin breaks at the slightest touch, causing painful, open blisters and wounds. EB can mean a life of extreme pain, disability and, at its worst it is fatal in infancy. People with severe EB are likely to contract a fatal skin cancer. DebRA provides specialist EB nursing, funds extensive medical research and provides counselling, welfare, respite and advocacy. "
The documentary was unbelievable. I don't think I have ever seen anything like it on TV. The documentary begins with Jonny, dead in his wheelchair and then his coffin. His own voice declares something like "that's me in the box." To see Jonny's pain and suffering, and his sense of humor, sarcasm, and outlook on not only life, but death.... it was quite a different experience. I was sad for Jonny and his family, amazed at all of the diseases that are out there which we know nothing about, and overwhelmed with emotion at his thoughts on death, planning his own funeral, and making his trip to the Prime Minister on his death bed. Amazing man.
One thing that I found myself thinking again and again.... how in the world do parents deal with it? I can not even begin to imagine having a child born with a genetic disease or a physical deformity. We all take for granted that perfect little baby with 10 fingers and 10 toes. If I were to be honest, I would have to say that if I were pregnant with a baby that had a defect as such, I would want to terminate. I know that there is "anti-abortion" and there are people who say you should take what god gives you but I don't know that I could take it. Because I am thinking about having kids before much longer, I just can't believe how much parents of these children go through, and although that may seem selfish, I am also seeing the quality of life, or lack thereof, that the children have. How could you watch someone that you love go through a life of pain and suffering, and be the object of stares and questions. What sense of normalcy is there? I feel guilty for thinking that I couldn't handle it, especially when looking at these strong mother's and fathers. But then I hear Jonny's mother say that if she KNEW jonny had that condition, she WOULD have terminated her pregnancy. That his suffering and pain is too much for him to bear, and too much for his family to bear. Then I feel relieved that even Jonny and his mother recognize that no one should have to go through what Jonny and his family have been through. And that termination is not something to feel ashamed for.
If anyone were reading this blog, I am sure I would have LOTS of comments on this one, especially from the catholic pro-life activists. How dare they say that they know what is best for someone in that position.
Overall, I was releived when Jonny was finally able to let go, to feel that his work was finished and that he had learned what god had put him on earth to learn. It amazes me that he lived that was for 36 long years, and his mother is a saint. Wow is she ever. She made it through all the pain and caring for Jonny. Amazing woman indeed. How this disease has gone unrecognized by the public eye for so long is beyond me. The hope for a cure is a big one.