Jonny Kennedy (4 November 1966 – 26 September 2003) was a British man who had a rare inherited condition known as dystrophic epidermolysis bullosa (EB or DEB). Kennedy ultimately died of

skin cancer Skin cancers are cancers that arise from the skin. They are due to the development of abnormal cells that have the ability to invade or spread to other parts of the body. There are three main types of skin cancers: basal-cell skin cancer (BCC) ...

, a complication of EB.

Biography

Kennedy was born in

Northumberland Northumberland () is a county in Northern England, one of two counties in England which border with Scotland. Notable landmarks in the county include Alnwick Castle, Bamburgh Castle, Hadrian's Wall and Hexham Abbey. It is bordered by land ...

, where he spent most of his life. He had a severe form of dystrophic

epidermolysis bullosa Epidermolysis bullosa (EB) is a group of rare medical conditions that result in easy blistering of the skin and mucous membranes. Blisters occur with minor trauma or friction and are painful. Its severity can range from mild to fatal. Inherited E ...

and was born with no skin on his left leg. In September 2002, Kennedy was diagnosed with terminal cancer and he was given a year to live. He was a Spiritualist who saw death as "a freedom and an escape."Death is freedom, life is a lesson
Times Online He died in 2003 at the age of 36, whilst being filmed for a documentary, on a train returning from a meeting at 10 Downing Street with

Cherie Blair Cherie, Lady Blair, (; born 23 September 1954), also known professionally as Cherie Booth, is an English barrister and writer. She is married to the former Prime Minister of the United Kingdom, Sir Tony Blair. Early life and education Booth ...

. One of Kennedy's favourite bands was

Queen Queen or QUEEN may refer to: Monarchy * Queen regnant, a female monarch of a Kingdom ** List of queens regnant * Queen consort, the wife of a reigning king * Queen dowager, the widow of a king * Queen mother, a queen dowager who is the mother ...

; at his funeral, the Queen song "

Don't Stop Me Now "Don't Stop Me Now" is a song by the British rock band Queen featured on their 1978 album ''Jazz'' that was released as a single in 1979. Written by lead singer Freddie Mercury, it was recorded in August 1978 at Super Bear Studios in Berre-le ...

" was played. His childhood friend

Lord Redesdale Baron Redesdale, of Redesdale in the County of Northumberland, is a title that has been created twice, both times in the Peerage of the United Kingdom. It was firstly created in 1802 for lawyer and politician Sir John Mitford (later Freeman-Mi ...

was in attendance and spoke as per Kennedy's request. He was cremated and his ashes were scattered at the

Tenantry Column The Tenantry Column is a monument to the south of Alnwick town centre, in Northumberland, England. It was erected in 1816 by the tenants of Hugh Percy, 2nd Duke of Northumberland in thanks for his reduction of their rents during the post-Napole ...

in Alnwick.

Documentary

After he was diagnosed with terminal skin cancer, Kennedy teamed up with filmmaker Patrick Collerton to make a video diary documenting the final few months of his life in order to raise awareness of his condition. In the film, ''The Boy Whose Skin Fell Off,'' which also featured interviews with his friends and family, Kennedy opens up about his feelings concerning his impending death, and offers a glimpse into the life of someone with his condition. ''The Boy Whose Skin Fell Off'' was originally intended for release only on local channels until it attracted the attention of Channel 4, who bought the film for national scheduling. When the film was first broadcast in March 2004 on

Channel 4 Channel 4 is a British free-to-air public broadcast television network operated by the state-owned Channel Four Television Corporation. It began its transmission on 2 November 1982 and was established to provide a fourth television service ...

in the UK, it received critical acclaim and attracted around five million viewers. It also helped raise £500,000 for the charity

DebRA Debra is a feminine given name. Debra may refer to: People * Debra Adelaide (born 1958), Australian writer * Debra Allbery (born 1957), American poet * Debra R. Anderson (1949-2022), American politician * Debra Austin (born 1955), American ba ...

, with the donations used to fund research, and to support families in the region affected by epidermolysis bullosa. The documentary was voted the sixth most popular film in the

programme ''The 50 Greatest Documentaries of All Time'', in 2005. However, certain medical professionals considered it "too graphic" and noted that it had caused anxiety and distress in patients with similar conditions due to its focus on Johnny's impending death. The documentary was aired again on Channel 4 in May 2020.

References

External links

DEBRA UK
(EB organization) – had strong ties with the Kennedys

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 {{DEFAULTSORT:Kennedy, Jonny 1966 births 2003 deaths Deaths from skin cancer Filmed deaths from natural causes British spiritualists