The Boy Whose Skin Fell Off (Jonny Kennedy) 1/5

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.

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  Education

[emobrownbearmc]

"So basically, whenever there is extreme friction, such as constant wanking, the skin just comes off" Love this guy

[SkyAndFlux]

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[Celia Giordano]

God might not of have blessed him with good health.... but God did bless him with an amazing personality and outlook on life that most healthy people out there would die to have....... Life can be very ironic but if you dont laugh through it every now and then like this brave soul did, whats the point of even going through it??

[MVulcaan]

Trolling or not, Stop being disrespectful of a good person who passed away. It is vile.

[Khokha Gogo]

he really made me cry

[Jessika Krueger]

You can quite easily see your brain and heart.

You'd be in an insane amount of pain and shock.

But it can easily be done.

[Jessika Krueger]

Is man god's biggest failure?

Or is man's biggest failure god? 

[MrPawldo]

What do you mean you can't see our brain and heart? Crack open your skull and chest and there they are... you can't do the same with some man-made fictitious nobody.

[Hunter Helis]

Just because you can't see him, doesn't mean he's not real. We can't physically see your brain or your heart... would you be imposing that you have neither?

[desiraeann99]

i was not borne yet