When Patrick Collerton’s documentary about the final days of her son’s life, The Boy Whose Skin Fell Off, was nominated for an Emmy in 2004, Edna Kennedy flew to New York for the awards ceremony. For the big night, Edna wore a sequinned purple dress and gold shoes, paid for by Lily Savage/Paul O’Grady. But when Edna and Patrick arrived at the red carpet banked by photographers, Patrick wanted to avoid the razzamatazz and sneak in the back door. ‘No way!’ said Edna. ‘I’m not going to miss walking up that red carpet.’

Edna Kennedy laughs at the memory of striding down the carpet with ‘photographers shouting to me and Patrick, “Look this way!” Although they hadn’t a clue who I was! To actually be a celebrity and have people trying to take your picture all the time must be horrendous. But for me, walking up that red carpet was wonderful.’

It was as different to the previous 36 years of Edna’s life as it’s possible to imagine. Edna’s son Jonny was born on 4 November l966 with a rare and incurable skin condition, dystrophic epidermolysis bullosa (EB), where even the mildest touch caused his skin to blister and flake off. Edna cared for Jonny throughout his life, changing his bandages every day, which often caused him agonising pain. ‘Can you imagine what it’s like picking up your newborn baby and you are actually blistering it?’ says Edna, who admits that her first reaction to her son’s death was relief rather than grief. ‘When you’re constantly watching someone in so much agony, you’re willing them to be free of that pain. I wouldn’t have wished Jonny’s condition on Saddam Hussein.’

There’s something terribly wrong. His right leg looks like cod’s roe

The Channel 4 documentary won the Emmy and 13 other awards. Edna was interviewed by everyone from Richard and Judy to most national newspapers. Radio 4’s Jenni Murray made her feel ‘so comfortable, you forgot the microphone,’ but she was a little irritated by a photographer from The Times ‘who had me virtually swinging from the chandelier. I said: “I’m not a glamour model. Just take the picture!”’