Jonny Kennedy
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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). Kennedy ultimately died of cancer, probably metastatic squamous cell carcinoma of the skin, a common cause of death in DEB patients.
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. By the time he grew up, such a test existed, and Kennedy had extremely negative views of EB pregnancy. When asked whether he would carry on with a birth, knowing that an EB child would be born, he said "No. I would terminate. It's not just a disabled child that's being born. It's disabling a whole family."
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 on a train returning from a meeting at 10 Downing Street with Cherie Blair.
One of Kennedy's favourite bands was Queen; at his funeral, the Queen song "Don't Stop Me Now" was played.
[edit] External links
- DebRA UK (EB organization) - had strong ties with the Kennedys
- eMedicine article on inherited epidermolysis bullosa, of which recessively inherited dystrophic epidermolysis bullosa is one type
- IEB DEBRA e.V. Interessengemeinschaft Epidermolysis bullosa e.V. DEBRA Deutschland
