Link to Extraordinary people: The boy whose skin fell off documentary
Documentary Description
Jonny Kennedy (November 4, 1966 - September 26, 2003)was the subject of the documentary The Boy Whose Skin Fell Off, which documented the final months of his life as he suffered from the rare inherited condition known as Dystrophic Epidermolysis Bullosa (EB or DEB). He was born with no skin on his left leg. Kennedy ultimately died of skin cancer caused by EB.
Kennedy was extremely candid about his feelings concerning his upcoming death in the film, which also featured interviews with his friends and family. When the film was first broadcast in March 2004 on Channel 4 in the UK, it attracted around 5 million viewers and helped to raise £500,000 for the EB charity DEBRA.
At the time Kennedy was born, there was no prenatal test for EB. Kennedy was a Spiritualist who saw death as "a freedom and an escape.The film saw him fulfill his lifelong aim of flying in a glider, which led him to think of life beyond death - "I think I'll be bored if the angels sit about on clouds plucking their harps all day. I'll be up there, getting them off their clouds, doing drops of 1,000 feet and then pulling up. I think you need to spice things up a bit."
He died in his wheelchair, whilst being filmed for the documentary, on a train returning from a meeting at 10 Downing Street with Cherie Blair.
