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Ìý Edna Kennedy 22ÌýMar 2004 Ìý
Jonny Kennedy from Alnwick, Northumberland, invited a film crew to record his last days before dying of dystrophic epidermolysis bullosa, EB, which leaves sufferers covered in blisters and sores.

Despite being in constant pain, the 36-year-old displayed a wicked sense of humour throughout a documentary The Boy Whose Skin Fell Off, which charted the last four months of Jonny's life as he bravely battled this painful genetic skin condition.

His mother, Edna talks to Jenni about her son.

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