The Boy Whose Skin Fell Off
I don’t know if you’re at all familiar with the Discovery Health channel, but a lot of their shows have really literal names: ”The Man Whose Arms Exploded” or “The Boy Whose Skin Fell Off” or “The Girl with No Face.” Things like that. Senior year of college, that’s all we watched. We learned about harlequin fetuses, skin turning silver, mermaid babies, a boy with tumors on his face (who, sadly, died a few weeks before the show aired - that was revealed in a epilogue sort of thing because where the show left off, he was alive and well!). Anyway, I’m going to post about the boy whose skin fell off.
- Jonny Kennedy was born in Britain in 1966 without skin on the lower part of his right leg.
- He had a genetic condition called Dystrophic Epidermolysis Bullosa (EB).
- Skin is composed of 2 layers - the edpidermis (outer layer) and the dermis, which is beneath it. The two layers are held together so that one layer does not move independently of the other. This is not so for people with EB.
- Anything that comes in contact with the skin and causes friction moves the top layer and causes a blister or sore, which can become an open wound.
- Babies with EB are sometimes referred to as “Cotton Wool Babies.”
- At the time of Jonny’s birth, there was no prenatal EB test. He is quoted as saying if he were to have a child and he knew this child had EB, he would abort the pregnancy - EB is something that disables a whole family.
- His mom, Edna, was the one who primarily took care of him. His father didn’t like Jonny being an object of curiosity and more or less tried to hide him.
- Since his vocal tissues were scarred, Jonny’s voice remained high and he never went through puberty. Though he lived to be 36, he appeared and sounded boyish.
- Each day, Jonny’s mom had to dress his sores, replace bandages and such, which was an extremely painful, lengthy process.
- In 2002, he was diagnosed with a rare, fatal form of skin cancer and decided that the rest of his life was going to be “extraordinary.”
- Jonny’s lifelong goal was to fly a glider and he did so before his death. Other goals were to have a housewarming party and visit 10 Downing St. which is where the Prime Minister lives.
- In one scene, he was planning his funeral with his mom and decided that he wanted to have a tiger and a picture of a Heinz beans label carved into his coffin. “It doesn’t mean anything but it will get them talking,” Jonny said of the Heinz label. Why the tiger?
- Says mother Edna, “Nine months before his death he laid a trail of paper paw marks in the house leading to a life-sized stuffed tiger with a note: ‘There’s still a lot of tiger left in me’. The tiger was his mascot.
- Kennedy died in September 2003 on the way home from 10 Downing St.
- Going further with the tiger thing: The day after he died, his mom went to his safe and found a note inside: ‘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’. She opened a package to find “a large gold brooch of a tiger with a ruby for an eye that he had had commissioned. I could have murdered him that he had gone to such bother.”
How heartwarming is that? He was a funny guy and this article tells the story better than I just did.
