A brave man trapped in torment

The Boy Whose Skin Fell Off (C4)

WHEN the hero of the story begins by declaring "My name is Jonny Kennedy. I'm interested in purchasing a coffin," you know instantly that this is going to be something extraordinary.

"Remarkable" is a word often used about people in real life documentaries. This time it was really deserved. A remarkable film about a remarkable man - Jonny Kennedy, a 36-year-old in the body of a child who suffered from a rare genetic skin condition (Epidermolysis Bullosa) all his life.

It led to cancer and, as we joined the film, he had been given 12 months to live.

Having chosen a coffin, to be decorated with a tiger and Heinz Beans label, he had one worry. "Where do you recommend I keep it? I'm not using it like straight away," he asked the carpenter.

The coffin was stored in the garden shed. Planning his funeral was one of the things he was determined to do before he died. Flying, visiting No 10 and holding a housewarming party at his Alnwick home were others.

He achieved all of them, as well as raising awareness and money for DEBRA, the charity devoted to helping others suffering from the condition.

The title and early shots of Jonny in his coffin may have deterred some from watching. The film was uncomfortable at times, notably witnessing the real pain that merely changing his bandages entailed, but was ultimately moving.

Jonny may have been known for his cheery, jokey manner but the film didn't shy away from showing him suffering, although never giving in, right to the end. Visibly weak, he insisted on travelling to London to No 10 in the hope of raising money for DEBRA. He died on the return journey.

There were other characters in the story. His mother Edna who asked viewers to imagine what it was like having a new baby and knowing that every time you picked him up, you were blistering his skin.

When she said she didn't think he was well enough to go to London, he told her to mind her own business. She didn't argue, knowing he was determined to go even if it killed him.

As he visited his grave of his late father Frank for the last time, Jonny said he's never really came to terms with the illness. Others, including older brother Simon and childhood friend Lord Rupert Redesdale, were more understanding.

He may have looked different but had the same feelings as everyone else. He had to sit by as a child while the other kids played. He hadn't been through puberty, and hadn't had relationships. "I miss out on a lot. It's just life," he said philosophically.

One thing that helped Jonny cope was a belief in the afterlife, and he regularly attended his local spiritualist church. "I believe we all come down to earth to learn lessons," he said. "Earth is a classroom. I feel I came down to understand what it is like to be in discomfort all your life, and learn about frustration, possibly overcome that."

Through the programme, he taught us some valuable lessons of his own about coping with adversity.