Jonny Kennedy

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Jonny Kennedy (4 November 1966 – 26 September 2003)[1] was the subject of the documentary The Boy Whose Skin Fell Off,[2] 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.[3]

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 UK, 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.

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."[4] 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.[4]

One of Kennedy's favourite bands was Queen; at his funeral, the Queen song "Don't Stop Me Now" was played. His childhood friend Lord Redesdale was in attendance and spoke as per Kennedy's request.

See also[edit]

  • DebRA, a international medical charity with national groups

References[edit]

  1. ^ Jonny Kennedy, biography on IMDB
  2. ^ The Boy Whose Skin Fell Off, Channel4.com
  3. ^ Jonny's legacy, The Independent
  4. ^ a b Death is freedom, life is a lesson, Times Online

External links[edit]

  • Jonny Kennedy North East (EB charity) - Charity set up to help sufferers of EB and their carers in Jonny's memory
  • 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