Blog · October 2, 2014

The Boy Whose Skin Fell Off

Ten years ago a documentary aired that I am yet to show Nicky and not sure I ever will.  I wasn’t even able to watch the whole thing in one sitting, I kept crying buckets and it took me three sittings to finish it. I guess you could say it hit a bit too close to home. The story was about a man with the same form of EB as my son and his final months of life as he purchases a casket and attends fundraisers, is interviewed etc., after he was diagnosed with skin cancer. Knowing he would not live long, he wanted this documentary to raise EB awareness. The documentary is widely available on YouTube and other venues nowadays, and a little over a year ago, after I finished reading the book that accompanied the documentary, I decided to watch it again, alas… it wasn’t any easier to. Once again, three sittings, a whole box of tissue gone.

As I am writing the book of Nicky’s life, I can’t refrain at times to mention certain passages from Jonny’s book because so much of what he went through parallels my son’s life and helps me understand my son better. At some point I might mention it to him and tell him where he can see the documentary if he wants to, but I am certainly going to tell him that while he may feel Jonny was a kindred spirit, at the same time I will have to warn him of his upcoming demise. Not exactly a subject I bring up to him, though he knows of all the wrong things that can happen with EB.

To be honest, I don’t think Nicky will ever watch it. It seems as if a lot of what keeps him in good spirits and happy is doing things that revolve around him being entertained and surrounded by love.

For anyone else that wants just a little small clue of the life of someone with a diagnose of Recessive Dystrophic EB, please watch. It will change your life, promise. Here it is below…