Anybody watching this on Channel 4 now?

Jesus - unreal.

That was one brave guy.

LINK

36-year-old Jonny Kennedy was an extraordinary man with a terrible condition - Dystrophic Epidermolysis Bullosa (EB) - which means 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.

Jonny decided to work with filmmaker Patrick Collerton to document his last months (he died in September 2003) in an uplifting, confounding and provocatively humorous story of a singular man. Not shying away from the grim reality of a life with EB, the film is nevertheless a celebration of a life lived to the full.

Jonny is frank about his feelings on his upcoming death and practical about the arrangements. "Is it going to be painful? How long will it last? Am I going to drag on and be a dribbling old fart? …I'd rather just go to bed, go to sleep, pop me clogs, over with.

"People, even in this day and age, are still frightened about death. They won't talk about it and it's such a shame because it's part of life. So, why not organise it like you would organise an anniversary or a birthday? Let's get it right."

Whether chatting up Nell McAndrew at a charity do, choosing a coffin with an intriguing baked-bean can motif, or deciding to leave home and live on his own, Jonny displays a devilish humour, an acute intelligence and an unwillingness to suffer his fate, or fools, gladly. The film features moving interviews with his friends and family, including his mother Edna who has been his life-long carer and faces the prospect of Jonny's death with disarming mixed feelings.

Jonny spent many years working with DebRA, the charity that raises money to fund research into the condition and the day before his death he realised a personal ambition by visiting Downing Street and securing Cherie Blair's support for the organisation.

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DebRA UK
For more information about DebRA UK - the national charity working on behalf of people with Dystrophic Epidermolysis Bullosa - or to make a donation, visit www.debra.org.uk or telephone 01344 771961.

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[This message was edited Sun Apr 11 13:42:49 2004 by katt]

<----- decides against poor taste joke.

dam i missed it

poor bloke

I cannot watch something like that, it would break my heart.....

I have 2 say (in ALL seriousness) if there was EVER a time that the google ad banners above DONT work...it's now.

It was a very moving story. What a brave guy. It makes you realize that your problems in life are pretty insignificant when compared to suffering on this scale. As far as his mother's mixed feelings regarding his death, I know from experience when my father died from cancer I was relieved that he died. 1. He wasn't suffering anymore, 2. It is a strain on the emotions to watch a loved one slowly waste away. Obviously, I was sad that he died and I miss him but it is selfish to want to have more time with a person when all they are doing with that time is suffering more. Anyway, rest in peace Jonny. Now you can wank in heaven without fear of it dropping off !

I'm eatin here!

But seriously, poor dude.

bananacologne said:

true dat

bananacologne said:

HI