Originally posted by Morbid4Daniel
The Boy Whose Skin Fell OffDid any of you watch it? Its repeating tonight at 10 EST on TLC.
How did such a crude and evil disease like that come about? cry
yeh I saw this when it was first shown over here last year.
It was sad but I thought it was a brilliant program.
showing how this guy even though he has this terrible illness still lived an amazing life and struggled against everything that was thrown at him to help others.
and how he kept such an uplifting spirit when alot of other people would have given up.
he was really inspiring and brave. ✅
Thirty-six-year-old Jonny Kennedy was born with a terrible genetic condition called dystrophic epidermolysis bullosa, which meant that his skin literally fell off at the slightest touch, leaving his body covered in agonizing sores and leading to his final fight against terminal skin cancer.
In his last months, Jonny decided to work with a filmmaker to document his life and death. The result is a film that tells the uplifting, confounding and provocatively humorous story of an amazing man on a mission to make his final days on earth memorable. Even at his very final moments, Jonny was still working desperately to raise awareness of this debilitating condition and to help find a cure. Jonny was also frank about his feelings on his upcoming death and practical about the arrangements. We join him as he chooses his coffin and has the symbols of his life etched into it. Not shying away from the grim reality of a terminal condition, this film is a celebration of a life lived to the very brim.