Louise’s London Marathon story in memory of Bella

“This is for you, my baby girl”

Hi everyone! My name is Louise, and I’ve decided to take on the challenge of running the London Marathon in 2025 in memory of my beautiful daughter, Bella.

Bella was born in 2015 with the devastatingly painful condition, epidermolysis bullosa (EB). Bella had severe junctional EB, or JEB, so she had blisters both internally and externally.

She also had pyloric atresia; a rare condition causing a blockage in her stomach, preventing food from emptying into the intestine.

When I found out my daughter was born seriously unwell with this condition, it turned my world upside down. Watching over her tiny body riddled in pain and feeling totally hopeless was undoubtedly the most heart-breaking time of my life.

When Bella sadly passed away a few weeks later, I made a promise to myself to do whatever I could to support others living with EB. It wasn’t until a couple of years later that we found DEBRA and learned about what they do for the EB community. We then knew we needed to support them in our fundraising efforts and do all we could for others suffering with this condition.

Running this marathon is a way for me to make a difference, no matter how small, in the lives of these brave individuals and families.

My hope is that the money raised will fund vital research into treatments for all types of EB, so one day, we find a cure. Together, I believe we can ease the burden for those affected by this cruel condition.

I made a vow to both myself and to my beautiful little angel that I would run the London Marathon in her honour on what would have been Bella’s 10th birthday. This is for you, my baby girl.