The Boy Who’s Skin Fell Off
A film about a man named Johnny Kennedy, who died in 2003 at the age of 36. Jonny had a terrible genetic condition called Dystrophic Epidermolysis Bullosa (EB). This condition made his skin literally fall off at the slightest touch, leaving Jonny’s body covered in agonizing sores, and leading to a final fight against skin cancer.
In his last month, Jonny decided to work with filmmaker Partrick Collerton to document his life and death. It is a film that doesnot shy away from the grim reality of EB, it is a film that also celebrates a life lived to the fullest.
Jonny was frank about his feelings about his upcoming death and practical about the arrangements. The film features moving interviews with Jonny’s friends and family, including his mother Edna. His mother was his life-long carer and faced the prospect of Jonny’s death with mixed feelings, she was torn between relief for Jonny, that he would not have to suffer anymore, but also knowing that once he was gone, she would miss him desperately.