Hello everyone!

I’m planning to run 150 miles (241km) throughout the month of April for a charity (DEBRA) who have helped us in really difficult times. I want to raise as much money and raise awareness for EB.

This is Darcies Story:

Our little girl Darcie was born on 4th December 2024. Throughout pregnancy, everything was perfect as expected. On the night of the 4th December, she was born with missing fingernails and patches of skin on her wrists. At the time, no one knew what had caused this and they suspected some form of infection. A few days later, Darcie’s skin started blistering for no reason. Again, only an infection was suspected after several different conversations with various consultants. She was given different antibiotics but these had no effect and the blisters kept getting bigger and bigger. Things would then get sent over to Great Ormond Street Hospital (GOSH) and they suspected something called Epidermolysis Bullosa (EB).

EB is a rare genetic skin disease. It causes the skin to blister from minimal friction or minor trauma. There’s 4 subtypes of EB (Simplex, Dystrophic, Junctional and Kindler). All of them range from mild-severe in severity. Sadly there’s NO cure for it and most people live in constant pain.

GOSH came to visit Darcie in hospital and done a skin biopsy on her leg. They also showed us how to do her dressings, as every blister has to be lanced straight away to stop it growing and stop the skin from shearing away. A week later, we received a visit at home from GOSH and they gave us the diagnosis. She has “Junctional Epidermolysis Bullosa - Severe” (JEB-S). Over time, the blisters become widespread and blistered areas develop into wounds which can be difficult to heal. The larynx (voice box) also blisters which causes problems with breathing and problems in the lining of the gut make it difficult for the baby to put on weight. The combination of these factors means many babies die within their first two years of life, many within months. Statistically, only 3 babies out of 1,000,000 born will be affected by JEB.

As you can imagine this has been difficult to navigate as a family. Everyday is different and we’re learning as it comes. We’re making the most of the little time we have with our sweet little girl.

DEBRA - The Butterfly Skin Charity. From the very start of our journey have been nothing short of amazing. They’ve supported us from the very start and have always offered help where needed. They’re an incredible charity with amazing people. Please help us give back so they can help other families going through the same as us.

Thank you reading x

DEBRA is the national charity supporting those directly affected by, and working with, Epidermolysis Bullosa (EB) – a potentially fatal skin condition that causes constant pain due to unstoppable internal and external blistering. DEBRA provides lifelong care and support to the entire EB community. DEBRA UK is the largest UK funder of epidermolysis bullosa (EB) research. We have invested over £22m and have been responsible, through funding pioneering research and working internationally, for establishing much of what is now known about EB.

We have a vision of a world where no one suffers from the painful skin condition epidermolysis bullosa (EB). Our research strategy focuses on what matters to people living with EB. Our ambition is to find treatments to lessen the day-to-day impact of EB, and cures to eradicate EB. We will fund science of the highest quality across the world that has the potential to deliver for EB patients.

Together we #FightEB and together we will beat EB.