Charity bosses want Jonny Kennedy legacy to live on

Sep 26 2009 by Sophie Doughty, The Journal

CHARITY bosses want to mark the sixth anniversary of the death of Jonny Kennedy by ensuring that his legacy lives on.

Whitley Bay-born Jonny suffered from the rare condition Epidermylosis Bullosa (EB) which causes a breakdown in the proteins which hold skin together, meaning his skin could literally fall off at the slightest touch.

For much of his life he suffered in silence, cared for by his devoted mum, Edna, until his story was featured in a book and award-winning television documentary.

The Boy Whose Skin Fell Off touched hearts all over the country when it aired in 2004, and helped other EB sufferers discover they were not alone.

And now six years after he finally succumbed to skin cancer at the age of 36, Jonny’s legacy remains as powerful as ever.

The charity Jonny Kennedy North East is going from strength to strength and has collected thousands of pounds for EB sufferers worldwide.

And Edna, 68, of Rochester, Northumberland, told The Journal that she still feels like Jonny is with her.

She said: “There is not a day goes past that I don’t think about him. But I feel like with all the work I am doing for the charity I am still running after Jonny now, just in a different way.

“It is like he is still here, I am still doing things for him but without the emotional trauma of seeing him suffer every day.”