I’m running the Ipswich Half Marathon for our brave little girl, Darcie 💜

On 21st September, I’ll be running the Ipswich Half Marathon to raise money for DEBRA, a charity that has been an incredible support to our family. This run is for Darcie, our beautiful daughter, and this is her story:

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Darcie’s Story

Our little girl Darcie was born on 4th December 2024. Throughout pregnancy, everything was smooth and without concern. But when she arrived, we immediately knew something was wrong — she was born with missing fingernails and patches of skin missing from her wrists.

Doctors initially suspected an infection, but within days, Darcie’s skin began blistering for no reason. Despite antibiotics and tests, her condition worsened, and the blisters kept growing. Eventually, her case was referred to Great Ormond Street Hospital (GOSH), where a rare condition was suspected — Epidermolysis Bullosa (EB).

EB is a rare, genetic skin disorder where even the slightest friction causes skin to blister, tear, and wound. There are four main types of EB, ranging from mild to life-threatening. Sadly, there’s no cure. Most people with EB live in constant pain, and every day brings new challenges.

After a skin biopsy, GOSH confirmed the diagnosis: Darcie has Junctional Epidermolysis Bullosa - Severe (JEB-S). This is one of the most serious forms of EB. In addition to widespread external blistering, JEB-S can cause blisters internally, including in the voice box, which affects breathing, and in the digestive system, making it hard to feed and gain weight.

Statistically, only 3 in 1,000,000 babies are born with JEB-S. Many do not survive beyond the first year of life. As a family, we’re taking things one day at a time, doing everything we can to make the most of the time we have with our precious girl.

Every dressing change is painful and delicate. Every blister must be lanced to stop it from growing and damaging her skin further. It’s a lot to learn, but we do it with love and hope, because Darcie deserves nothing less.

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Why I’m Running for DEBRA

From the very beginning, DEBRA – the Butterfly Skin Charity – has been there for us. They’ve offered emotional support, practical guidance, and a community of people who truly understand what we’re going through. Their work is life-changing, and we want to give back so they can continue helping families like ours.

DEBRA is the national charity supporting people affected by EB. They fund world-leading research to find effective treatments and, one day, a cure. So far, they’ve invested over £22 million in research and are committed to a future where no one has to suffer from EB.

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Please, if you can, donate to help us support DEBRA’s incredible work. Every donation, no matter the size, helps make a difference.

Thank you so much for taking the time to read our story. And thank you for standing with us, for Darcie, and for all the families affected by EB.

Together, we #FightEB.