Two Wheel Forums banner
1 - 6 of 6 Posts

·
Registered
Joined
·
2,876 Posts
Discussion Starter · #1 · (Edited)
I was just watchin' TLC, for those who don't know..."The Learning Channel", it's there for those who want to gain knowledge as their programs are very educational.

But anyways, I was watchin' a show called , "The Boy Whose Skin Fell Off", this is what it's about...

THE BOY WHOSE SKIN FELL OFF


A year ago, 36-year-old Jonny Kennedy died. 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, 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.

Astonishingly, The Boy Whose Skin Fell Off captivated nearly 5 million viewers and helped to raise £500,000 for the EB charity DebRA. Six months later, 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.

But the film, and the reaction it has had from viewers, has had a profound effect. "It's been an unbelievable experience," she says. "Jonny wanted to do the film to get EB and DebRA better known, but it has been so much more than that; the film seems to have touched so many people.”

"Jonny has achieved something amazing and I know that, wherever he is now, he will be jumping with joy at the response the film has had."


This is what he looks like:

 

·
Banned
Joined
·
3,078 Posts
sad yes but to long also i am not going to read it but i think i got the sence of what it is about nd that sux :nonod:
 

·
Registered
Joined
·
2,006 Posts
I watched that Special on Sunday night at 8. It was actually pretty decent. I was impressed that Johnnie's attitude was so positive. He was handeling the disease very well as most people probably woul dhave thrown the towel in and wanted to die. Most people dont even know such a disease exists and effects thousands of people. Saw the special again last night since Monday night TV is all repeats. Funny when they had the British actress (who was hot) with him working to raise money for the foundation. He was talking about how he could look right down her shirt when she was bent over in front of him. LMAO
 

·
V-Twin Moddin
Joined
·
38,916 Posts
It is amazing how some people just embrase (sp?) their disease and do everything they can do to not let it hold them back. They want to live their life and their positive outlook on such a negative thing is just amazing and should be a inspiration to the rest of us. We are all very blessed with good health!
 
1 - 6 of 6 Posts
Top