Ihe ịma aka igwu mmiri DEBRA 2025

My wee friend Isla is 16. She’s bright, funny, full of life — and yet she lives in constant agony.

Isla has a rare skin condition called Epidermolysis bullosa (EB), more commonly known as butterfly skin. Her skin is so fragile that even a gentle touch can cause it to blister and tear. Every week, Isla endures hours of agonising dressing changes. She relies on the strongest painkillers just to get through the day.

And heartbreakingly, there’s no cure — yet.

That’s why I’m taking on the challenge of a lifetime this May: swimming the English Channel and back. Because Isla needs more than our sympathy — she needs a solution.

There is hope. Promising drugs exist that could slow or stop the progression of EB. They could ease the pain, help wounds heal faster, and give people like Isla a life that’s not ruled by pain. But before these treatments can reach families, they need to go through clinical trials — and those trials cost money. Up to £500,000 per drug.

So I’m asking you, from the bottom of my heart: will you help me?

Every donation will bring us closer to real treatments. To real relief. To a world where children and adults living with EB like Isla don’t have to wake up dreading the pain.

Please sponsor our swim today. Or take on your own challenge — a sponsored swim, a run, anything you like — and raise funds for life-changing EB research.

Let’s do something extraordinary for those living with this cruel condition.

Daalụ,

Graeme Souness CBE
Vice President, DEBRA UK