The Boy Whose Skin Fell Off (Jonny Kennedy) 2/5

Jonny Kennedy died in 2003 aged 36. He had a terrible genetic condition called Dystrophic Epidermolysis Bullosa (EB) -- which meant that his skin literally fell off at the slightest touch, leaving his body covered in agonising sores and leading to a final fight against skin cancer.

In his last months Jonny decided to work with filmmaker Patrick Collerton to document his life and death, and the result was a film, first broadcast in March 2004, that was an uplifting, confounding and provocatively humorous story of a singular man. Not shying away from the grim reality of EB, the film was also a celebration of a life lived to the full.

When it was first shown, The Boy Whose Skin Fell Off captivated nearly 5 million viewers and helped to raise £500,000 for the EB charity DebRA. Channel 4 is re-screening the film and re-visiting Jonny's family to see how they have come to terms with his death and the public's reaction to the film.

Jonny was frank about his feelings on his upcoming death and practical about the arrangements. The film featured moving interviews with his friends and family, including his mother Edna, who had been his life-long carer and faced the prospect of Jonny's death with disarming mixed feelings, torn between relief for Jonny and knowing that she would miss him desperately.

Category:

Education

Tags:

• Jonny
• Kennedy
• boy
• whose
• skin
• fell
• off
• Dystrophic
• Epidermolysis
• Bullosa
• DEBRA
• cancer
• EB

[unholychunk]

i feel like a complete bitch for ever feeling down about anything. i have ever felt down about in my life. this guys life isvery humbling

[whatuhhidk2]

I hardly ever cry, but this got to me.

The only comparison I have is that I get migraines and when they're really bad it's hard not to think "I want to die, just anything that will make the pain stop" but he pressed through when he was in pain ALL THE TIME.

Jonny is amazing. He should have been President.

[mmmperhaps]

@HoroSc0pe I wonder how you thought that was a smart or appropriate thing to say. Ugh.

[snowfall8484]

This guy is my hero. Seriously. But when I'm about to get really depressed while watching this, he makes me laugh with his sense of humor <333

[TheJediCharles]

Every drop of his condition aside, he was a perfectly interesting and decent human being. People have the typical reaction to overstate matters, such as "he should have been president" or "he's god" or blah blah, but the truer thing to say about him is it would have been interesting to have known what he'd have been had he not had this condition. I suspect it made him who he was and he'd have been frankly less remarkable to hear. Trials by fire elevate us, and was clearly elevated very high.

[metalmuff1991]

the guys a pro lol i love his sense of humor.

[HoroSc0pe]

he looks like a horse look at his hands

[josidemoya]

This story is very inspiring! I cried so much! What a strong person! WOW!

[NIGHT2PWN]

man, looking at this person and comparing him to me, just makes me want to let out my true side and see how ugly i truly am. this man's life is most likely more worthy to live than mine. i want to be a better person and like ghandi said "be the change you want to see in the world"

[HeavyMetalHindu]

@SarahFanSocks Me too, I was like "Oh you little shit!" But I loved the guy all the more for it

[SarahsFan1]

Oh my god. When he dropped his hat in the end of this part I just wanted to have been there to help him and give him a big hug. He seems to be a fantastic person. Unimaginable how much he suffered.