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.

Category:

Education

Tags:

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

[Gr8rThenU]

"constant wanking doesnt goto well" You just find ways to make me laugh XD

[armoguy7]

its takes a man to go buy his own coffin

[bobanddavid90]

@rctriplefresh5 They're both him, it's two different scenes. In the yellow shirt, he had recently died. In the coffin, it's a little bit later.

[iCharceus]

that is one cool person to look up to.

[eoaaao]

"am I going to be a dribbling old fart?" ahaha

[rctriplefresh5]

@Avatarfan10000 i understand tht but is he the boy in the yellow shirt or the guy in the box...it looks like they are inn the same room at the same time..and the boy in the box doesn't look 5'3 like ohnny...but then again idk what they do with bodies once they are dead....and maybe once i watch the other parts it will make sense can't understand a word they are saying(im americsn)

[Avatarfan10000]

@rctriplefresh5 He filmed this knowing he was going to die so he recorded his story like he was telling it.

[plempathy]

wow this doco is so amazing <3

[mmmperhaps]

@rctriplefresh5 because the project was started before he died, and he knew he would die, so he recorded it in future "present" tense, if that's understandable....

[rctriplefresh5]

i'm confused..johnny is at :51...but why does he say he s in the box at 1:14?

[MultiKnifelover]

owwwwwwwwwwwwwwwwwwwww that must hurt

[lauprilham]

well he bough the coffin thinking in the relief he is going tohave after aaaall those years of painful hurt he is like finally the last round I happy done with it!!!