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.
