Background
He was born with no skin on his left legal
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Jonny Kennedy
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Career
Kennedy ultimately died of skin cancer caused by EB. In the film, which also featured interviews with his friends and family, Kennedy was extremely candid about his feelings concerning his impending death. When the film was first broadcast in March 2004 on Channel 4 in the United Kingdom, it attracted around 5 million viewers and helped to raise £500,000 for the EB charity DebRA. The documentary was voted the sixth most popular film in the Channel 4 programme, The 50 Greatest Documentaries of all time, in 2005. Kennedy was a Spiritualist who saw death as "a freedom and an escape." The film saw him fulfil 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. One of Kennedy"s favourite bands was Queen.
At his funeral, the Queen song "Don"t Stop Maine Now" was played. His childhood friend Lord Redesdale was in attendance and spoke as per Kennedy"s request.
