Ben Runs Ipswich Half for Daughter Darcie

Ben is running this year's Ipswich half marathon to raise awareness of Epidermolysis Bullosa after his daughter, Darcie, was born with the condition.

EB is a rare genetic skin condition that causes the skin and internal linings to blister and tear form the slightest touch or friction. Darcie suffers from Junctional Epidermolysis Bullosa, one of the most severe forms of the condition, meaning it also affects her airways and digestive system as well as her skin.

There is no known cure for the condition, and most children born with EB don't survive past the age of 2.

"Every day is full of dressing changes, wound care, and constant vigilance. It's emotionally and physically exhausting - but Darcie is full of strength, and we're doing everything we can to make her life as comfortable as possible, and to give her a life full of love."

That's why Ben is running to raise money for DEBRA, the Butterfly Skin charity, which has been a vital lifeline for Darcie and her family, providing support, resources, and compassion. DEBRA also funds ground-breaking research into treatments for the condition, and hopefully into a future cure.

"I'm running to raise awareness of this devastating condition. To give back to a charity that gives families like mine hope. Because every child deserves a pain-free life. And most of all, to honour Darcie's bravery. Every single day she still manages to put the biggest smile on her face. She's the strongest little girl, and she's my best little friend. This is the least I can do for her."

You can support Ben on his mission to raise money for DEBRA by visiting his JustGiving page seen below.