I watched a programme last night on Discovery called The boy whose skin fell off (yeah I know that's a link to the wrong TV network, but it's the same programme). It's about a 36 year old guy called Johnny Kennedy with Dystrophic Epidermolysis Bullosa (EB). This means that his skin literally falls off and turns into a sore if rubbed or bumped too much or from "incessant wanking" as he puts it. The disease eventually kills him by turning into skin cancer. The thing that got me most is how he arranges his funeral much like he would a birthday party. His never ending humour is quite sharp at times. He started a charity called DebRA which is working on behalf of people with EB. If you get a chance to see this programme, do so. It's a very amazing story.

There's another showing of this program on June 26, on The Learning Channel (TLC). That will be my fist time watching it but it seems very interesting.

I watched the program tonight on tlc june 26 2005, if anyone knows how i can donate to the charity please email me at
cloutierfamily1@shaw.ca
i could not help but feel sad for johnny, i know he didnt want anyone to feel sad for him but you just cant help it.. so please if anyone knows how i can donate or get a hold of his family thats would be great

Try DebRA. That's the charity for this particular condition. For more information, please visit their website.

I watched this it was so sad i almost cried but it wakes you up and rings a bell saying that not everyone is normal ( not saying he wasn't normal just saying functional ways). He was right everyone is put on earth to learn a lesson. I am 13 years old i don't know if i understand everything right but i tried



Kansas, kid

On june 26, i was randomly flipping through channels and stopping on some every now and then when i came across this movie. I watched for a minute, not knowing if i was going to like it or not, but the farther i got into the movie, the more i realized what these poeple go through. I cried and my skin crawled at the sight of his mother pulling off his bandages. When he cried like that, it made me feel like getting into the t.v. and giving him a hug and telling him that everything was going to be okay. He was very couragous. The fact that he didn't care about what other poeple were thinking about him, and he could wake up every morning and laugh and joke about things that anyone without eb can, was amazing to me. God couldn't have given him a worse situation, but everyday, he made the best of it. That is amazing. He opened up my eyes, and maybe everyone should take a minute to really watch this movie. He said everything he needed to, and one thing he said in that movie that really touched me was "Everyone is put on this earth to learn a lesson" That movie made my family and I learn that not everyone is the same, and that just because someone else is different, doesn't mean you should take advantage of that and laugh. Really, does it or would it make you feel good to laugh about someone? I just really enjoyed this movie, and it touched my heart in many ways.

well, i guess i am behind i just saw this documentary the 24th of october. it made me cry not because it was sad as much as it was beautiful. it seems there are very few truly beautiful people in this world and the few that we do have don't get to stay long. to know that there can be so many terrible things and people in the world and then to know that there are truly great things and truly great people well, it makes life seem like its worth living. to know that someone could have been handed such a fate and could be so selfless. to know that despite the inevitable they have nothing negative to say about anything. what a beautiful man he was and how lucky the world was to have him.

I saw it. And I can't even talk about it without crying.

God Bless Johnny Kennedy.

See you in heaven Johnny! Thanks for all did to help bring awareness for this terrible disease.