A truly heroic story

On Monday, October 4 at 8pm, Channel 4 is repeating "The Boy Who Skin Fell Off", the incredible story of Jonny Kennedy. (Those of you who've been with me since Issue One may remember me telling you about the first showing.)

Jonny had the devastating skin condition EB, which means the skin isn't properly attached and blisters at the slightest touch. He was a fervent spokesman for my client, DebRA, the charity that researches treatments for EB and helps those with the condition.

Last time the film went out, DebRA's supporter base doubled and they raised £500,000. That was a fabulous result, but even half a million pounds only goes so far in funding DebRA's vital genetic research.

If you haven't seen the programme yet, I'd urge you to watch it this time. It's not easy viewing, following as it does Jonny's final weeks of life until his death from cancer. During this entire time, he devoted himself to raising awareness of DebRA and its work. It's a frequently heart-breaking story.

But it's also profoundly uplifting: Jonny's extraordinary character and courage shine through, and it's difficult to believe just how completely he triumphs over his condition. Spiky, outspoken, fearless and bursting with energy, he refused to let EB define him or his life.

So do have a look: Monday, 4 October on Channel 4, at 8pm. And if you can, do your bit to support DebRA - they're still a little-known and hugely under-resourced charity. But the work they do is amazing, and deserves a much higher profile.

Find out more about DebRA