The Boy Whose Skin Fell Off (Jonny Kennedy) 3/5

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

[erickav808]

aw man, my heart just broke when his clothes were being removed. that must be so painful and he had to deal with that on a daily basis. :(

[Normpercy]

aw man jesus i feel so bad for him hes got such an amzing personality hes such a good person...

i pray you Johny God bless you my friend your my hero.

Norm from Cadana

[aryaloves]

I literally cried when he started describing that mountain side.

[kayla42oo]

thumbs up if you closed your eyes at the end and pictured that mountain with a clear stream ;( it gave me chills..the whole video did..R.I.P Jonny Kennedy, may your soul soar to great heights wherever you may be ♥

[schecterdoom]

FUGGING ONIONS

[LittleRicky63]

0:21 Did he just sing I was always a crap singer? lolololol

[ULTRAVIOLET3333MUSIC]

wow, and to think i think i have a hard life.

[sifujamie]

just when you think you've seen it all... jeez

[Trent0196]

omg i cried so much my heart fell apart from this RIP Johnny :(

[MegaDemonte]

cool he looks like a grand pop

[TheJediCharles]

@ledZeppelin7680

Shut up.

[ledZeppelin7680]

@TheJediCharles pathetic inbred american ;)