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 do they opt for surgery which has major risks of complications?

The Boy with Proteus Syndrome is a film about a little boy with an unquenchable spirit and his remarkable parents who must fight to make his life as good as possible. The film follows Jordan and his mum Tracey as they travel to the USA to visit one of the few centres in the world dedicated to researching Proteus Syndrome. There they hope the specialists will be able to advise then on what to do.

Find out about the support that is available in the UK for families living with Proteus Syndrome, below. Or follow this link for further related information on channel4.com.