Jonny Kennedy
Encyclopedia
Jonny Kennedy 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
. 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." 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
.
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.
Epidermolysis bullosa
Epidermolysis bullosa is an inherited connective tissue disease causing blisters in the skin and mucosal membranes, with an incidence of 1/50,000. Its severity ranges from mild to lethal. It is caused by a mutation in the keratin or collagen gene....
(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
Channel 4
Channel 4 is a British public-service television broadcaster which began working on 2 November 1982. Although largely commercially self-funded, it is ultimately publicly owned; originally a subsidiary of the Independent Broadcasting Authority , the station is now owned and operated by the Channel...
in the UK, it attracted around 5 million viewers and helped to raise £500,000 for the EB charity DebRA
DEBRA
DebRA U.K. is a British medical research charity dedicated to the curing of Epidermolysis bullosa. Epidermolysis bullosa is a genetic condition that in its most severe forms affects all of the body's linings, the skin, the linings of the mouth and oesophagus, etc - even the eyes...
. The documentary was voted the sixth most popular film in the Channel 4
Channel 4
Channel 4 is a British public-service television broadcaster which began working on 2 November 1982. Although largely commercially self-funded, it is ultimately publicly owned; originally a subsidiary of the Independent Broadcasting Authority , the station is now owned and operated by the Channel...
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." The film saw him fulfill his lifelong aim of flying in a glider
Glider (sailplane)
A glider or sailplane is a type of glider aircraft used in the sport of gliding. Some gliders, known as motor gliders are used for gliding and soaring as well, but have engines which can, in some cases, be used for take-off or for extending a flight...
, 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
10 Downing Street
10 Downing Street, colloquially known in the United Kingdom as "Number 10", is the headquarters of Her Majesty's Government and the official residence and office of the First Lord of the Treasury, who is now always the Prime Minister....
with Cherie Blair
Cherie Blair
Cherie Blair , known professionally as Cherie Booth QC, is a British barrister working in the legal system of England and Wales. She is married to the former Prime Minister of the United Kingdom, Tony Blair; the couple have three sons and one daughter...
.
One of Kennedy's favourite bands was Queen
Queen (band)
Queen are a British rock band formed in London in 1971, originally consisting of Freddie Mercury , Brian May , John Deacon , and Roger Taylor...
; at his funeral, the Queen song "Don't Stop Me Now
Don't Stop Me Now
"Don't Stop Me Now" is a song by English rock group Queen, featured on their 1978 album Jazz. Written by vocalist Freddie Mercury, it was recorded in August/September 1978 at Super Bear Studios in Berre-les-Alpes , France, and is the twelfth track on the album.Musically, the song is based around...
" was played. His childhood friend Lord Redesdale
Rupert Mitford, 6th Baron Redesdale
Rupert Mitford, 6th Baron Redesdale is a British peer and politician. He currently sits in the House of Lords as a life peer, Baron Mitford with the Liberal Democrats.Mitford succeeded to the title in 1991...
was in attendance and spoke as per Kennedy's request.
External links
- 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