Jonny Kennedy

The Boy Whose Skin Fell Off

Patrick Collerton

Jonny Kennedy

A year ago, 36-year-old Jonny Kennedy died. He had a terrible genetic condition called Dystrophic Epidermolysis Bullosa (EB) - which meant that his skin literally fell off at the slightest touch, leaving his body covered in agonizing sores and leading to a final fight against skin cancer. In his last months Jonny decided to work with filmmaker Patrick Collerton to document his life and death, and the result was a film, first broadcast in March, that was an uplifting, confounding and provocatively humorous story of a singular man. Not shying away from the grim reality of EB, the film was also a celebration of a life lived to the full.