Roger Stutter, a good friend of Jonny Kennedy's, helped Jonny tell his story. The book is available online at Tonto Books.

"I'll tell you the story of my life and my death, " begins Jonny Kennedy at the start of a documentary as he introduces his mother and brother and himself, as he lies dead in his coffin.

Jonny Kennedy was born in 1966 with an incurable and painful genetic disease called epidermolysis bullosa (EB). It's been called the "worst disease you've never heard of". Basically, people with the disease are born with extremely fragile skin, any kind of friction even the rubbing of clothing, causes the skin to separate and form painful blisters. For those people, like Jonny, who had the lethal form of EB, the chronic damage would eventually lead to skin cancer.

But, despite all the challenges Jonny faced in his life, he was determined to make the best of it. He had a very cheeky sense of humor and was not afraid to tell you what he was feeling straight out. When he found out that he had developed skin cancer he was approached about allowing the last months of his life to be filmed for a documentary. Channel 4, a British public-service television broadcaster, helped make the end of his life a grand adventure. Cameras followed him around in the last four months of his life and recorded his death in a documentary called "The Boy Whose Skin Fell Off".

So he decided to spice things up and he made a bucket list. He went hang gliding, flew on the Concorde, sailed on the QEII, got his own apartment and decided to organize an unforgettable funeral, which he hoped would bring a smile to people's faces. He chose how his service was to be celebrated, visiting different churches in his area and talking with the ministers. He invited his brother and a long time friend to speak at his service before he was cremated and gave them a few short messages he would like to convey. He had a favorite vest that his mother suggested he wear but he said all he wanted was to wear a bright colored shirt and that his mother could sell that vest for a good sum on eBay.

He decided on the coffin he would like built, even visiting the place and talking to the men who would build it. He chose a simple pine coffin and wanted a tiger carved into its side because tigers are strong and because Queen was his favorite band. The band's song Don't Stop Me Now with its lyrics "I'm a shooting star leaping through the skies. Like a tiger defying the laws of gravity" was to be played at his funeral. The other design he wanted carved on his coffin was a Heinz Beans label, "I want people sitting at my funeral, nudging each other going, 'What's the Heinz Beans signify?' It doesn't mean anything but it will get them talking." said Jonny with a grin.

Jonny had decided views on death "People even in this day and age are still frightened about death. They won't talk about it and it's such a shame because it's part of life so why not organize it like you would organize an anniversary or a birthday? Let's get it right."

Jonny died on September 26, 2003 in his wheelchair on a train as he was returning home from meeting with Cherie Blair, the wife of former British PM Tony Blair. Jonny was trying to raise awareness of EB so other children born with the disease would not have to live as he did.

The day after he died, His mother Edna found  a note addressed to her which said, "Do not be sad for I am free. I could not have done so much with my life were it not for you. I leave you with a symbol of my strength and all my love." The parcel contained a gold brooch that Jonny had made for her. It was fashioned in the shape of a tiger with a ruby for an eye.

Watch The Boy Whose Skin Fell Off

Jonny Kennedy North East EB Charity