The Boy With Proteus Syndrome

Channel 4 9pm

Logline:  A nine-year old boy faces the life threatening challenges of living with Proteus Syndrome, the condition suffered by Joseph Merrick, The Elephant Man.


Nine-year-old Jordan has an angelic face and a wicked sense of humour. He loves playing football, swapping cards with his mates and riding his new bike. But Jordan has Proteus Syndrome, an extremely rare genetic condition, which causes bones, joints and their connective tissue to grow uncontrollably. In Jordan it has progressed so rapidly that doctors say that he should not be able to walk let alone play his beloved football.

Now, Jordan and his family face a decision. Do they do nothing and accept that the condition will stop him from walking?  Or opt for potentially life threatening surgery…


Director: Julia Stovell.

Producer: Vicky Crawley.

Series Producer: Patrick Holland.

Executive Producer: Charlotte Moore.

Photography: Gary Moore.

Film Editor: James Hay.

Composer: Richard Heacock

Narrator: Christopher Eccleston.

Production Company: IWC Media.

Long-listed for the BAFTA Breakthrough Talent Award sponsored by HBO.


“The Boy with Proteus Syndrome’s account of cruelty was very moving and even consoling. And because the humans around him reminded you that the species isn’t entirely predatory, but can be ingenious and brave and loving too. Julia Stovell’s film showed that what lies in our hearts is far more important.”
Thomas Sutcliffe
The Independent
“This sensitive film follows Jordan and his mother as they visit the doctors in America to decide whether he should undergo potentially life-threatening surgery on his legs. The determination of his family is touching yet it is Jordan’s boyish normality that makes this film so poignant”
Victoria Segal
The Sunday Times