The Boy Whose Skin Fell Off

[selkie]

Did anyone watch THE BOY WHOSE SKIN FELL OFF on TLC Sunday night ?

I did and it changed the way I will view my life and living forever.



Thirty-six-year-old Jonny Kennedy was born with a terrible genetic condition called dystrophic epidermolysis bullosa, which meant that his skin literally fell off at the slightest touch, leaving his body covered in agonizing sores and leading to his final fight against terminal skin cancer.

In his last months, Jonny decided to work with a filmmaker to document his life and death. The result is a film that tells the uplifting, confounding and provocatively humorous story of an amazing man on a mission to make his final days on earth memorable. Even at his very final moments, Jonny was still working desperately to raise awareness of this debilitating condition and to help find a cure. Jonny was also frank about his feelings on his upcoming death and practical about the arrangements. We join him as he chooses his coffin and has the symbols of his life etched into it. Not shying away from the grim reality of a terminal condition, this film is a celebration of a life lived to the very brim.

The Boy Whose Skin Fell Off premieres Sunday, June 26, at 8 p.m. ET/PT only on TLC.

link

[sasharae]

I watched it and I feel exactly the same way you do, selkie. Heartbreaking, funny -- I fell in love with him and was so humbled by him. I won't be complaining about anything in my life anytime soon.

[pepper67]

I knew someone who had dystrophic EB (he died a couple of years ago), and it is the most horrific disease I've ever seen. Calling it a 'skin condition' (as some people do) really doesn't even begin to cover it. A lot of EB sufferers end up dying from skin cancer because of the amount of damage the skin takes over the years.

When I was in college, I was reading in a magazine about this little girl who has EB, and mentioned it to a fellow student, who denied that such a condition existed because he couldn't believe that anyone could live with that kind of illness. I was like, "WTF?!"

Btw, if anyone wants to know more (or to order the DVD of 'The Boy Whose Skin Fell Off'), the charity for EB, DEBRA, is here.

[raqs]

I had seen the promos on TLC but couldn't bring myself to watch. Since becoming a mum I suffer from Cry-At-The-Drop-Of-A-Hat Syndrome and I kept welling up everytime I heard "and that's me in the box".

Stories like this always, always make me thankful for my health and the health of my daughter. Makes you want to smack those people (addicts, etc), who are willfully destroying their bodies, upside the head.

[Deleted]

Thanks to you guys I watched it tonight. A truly inspiring story about faith, determination and strength.

[thingee]

This was an unbelievably beautiful yet heartbreaking show. I totally agree that it was life-changing to watch.

I had a friend in high school with EB. I had no fucking idea at the time how much pain she must have been in, nor did it really click that she probably wouldn't live long. I had no clue and wish I had bothered to learned more about her condition at the time.

[Deleted]

Thank you guys, too -- I was surfing last night and saw the show was on and watched it because I had read this thread. Johnny Kennedy was an amazing human being -- and given recent news events focusing on cows like Oprah bitching about being locked out of Hermes, nutcase Tom Cruise shoving his fucked up ideology and personal relationships down my throat, this show showed truly put in perspective a life well lived with good humor, grace and DIGNITY. I just kept thinking throughout the whole thing about the nerve of Oprah making a federal case because she couldn't buy a watch and here was a guy who had lived his life EVERY SINGLE FUCKING DAY in excruciating pain who could only dream that the greatest "hurdle" he'd face was being locked out of a STORE. What a wonderful, wonderful show -- it broke my heart watching it but was worth every minute of viewing -- and hopefully, viewing again.

There was a documentary on HBO called My Flesh and Blood last year -- and one of the children the woman in the doc had adopted had EB. He was absolutely adorable -- but at 18, I believe, had developed kidney cancer. Such a terrible, awful disease.