Sunday night we watched The Boy Whose Skin Fell Off, on TLC. This is a documentary that originally aired in England, I believe.
It is the story of Jonny Kennedy, a man who was born with a genetic skin condition called Epidermolysis Bullosa, which causes the skin to essentially blister and fall off at the slightest touch. Jonny was 36 years old at the time of his death, and agreed to do this documentary to help raise awareness of the condition and help get funding for research for its cure.
The documentary gives you a look at Jonny’s life and the constant pain he was in as a result of the condition. The most amazing thing about the documentary however, is the look at Jonny and the great outlook on life and wonderful sense of humor this guy had in the face of a horrible affliction.
The show was touching, as you watch Jonny prepare for his death after being diagnosed with skin cancer, apparently a pretty common outcome for people with EB.
The only complaint I have is the extreme amount of advertising that stations air during this type of show. It was completely out of control, I’m assuming due to the visibility of the show. Its sad that everything turns into an advertising blitz these days, especially since finding something that is actually worth watching on TV is such a chore these days.
Just a clue to the networks: a commercial break every five minutes is unnacceptable, m’kay?
Related Links
- The DebRA Home Page
- Jonny Kennedy Page at Debra.org
- Death is Freedom, Life is a Lesson – Article in English Newspaper
Bieber Labs 
I feel for you. This documentary was first aired on British Channel 4 with only two or three short(ish) breaks, as is usual here for commercial television.
I would imagine that the whole impact of the film was lost with the advert ‘blitz’.
My name is Amy Heuston, I am an 18 year old girl who lives in Canada. Last night I was watching tv and I saw the tittle, The Boy Who’s Skin Fell Off. That made me wonder what it was about so I watched it. I don’t usually watch documentary kind of things, but right as soon as I heard Kennedy’s voice, I was interested. I cant believe how strong he was throughout that whole ordeal. He was making jokes about it and other things on the radio, and just on a daily bases. He is defiantly someone who I would have loved to meet. He had great spirits, and he never let the fear of death get to him. I can honestly say, I never thought anyone, let alone the state that he was in, go pick out their own coffin, and make jokes about what its going to look like. I was greatly afraid of death, but when he said the part about not to be afraid of death, and to plan your funeral as if it were an anniversary, that really got me to thinking, and its true, why spend your whole life thinking about death? yes its eventually going to happen, but live life right now as you can. Kennedy had a horrible dases, and he still was vibrant, loving, funny, and strong person. To me, he was something special, and im very proud of how strong he was. He will always be remembered by me, and he will be a legend.
Oh what an incredible man and inspiration to all of us! Sad we had to lose a man with such a strong, beautiful spirit but glad he is now released from his suffering. Jonny’s story made me cry, laugh, ponder, cringe in horror, be thankful, feel stronger, fear death less.. an entire range of emotions. Truly one of the most touching shows I have ever seen on television. Loved his can of beans and Queen song for his funeral. Wherever you are out there, Jonny, thank you. Thank you SO much. You are still loved. Thank you for teaching me such wonderful things in less than an hour.