Chloe & James Run for Debra

The Short Version

From my first ever race to a Half Marathon with a Total Warrior in between, and now our biggest challenge yet, the Manchester Marathon. Running for DEBRA, powered by a great cause and questionable decisions.

Our story

Last year, we set ourselves a challenge that felt completely outside our comfort zone. We completed the AJ Bell Great Manchester 10K, the 12K Total Warrior, and the Manchester Half Marathon.

We took on these challenges in support of DEBRA, the charity that supports people living with Epidermolysis Bullosa, often called butterfly skin because of how fragile the skin can be.

After nearly 29 years of saying I couldn’t even run for a bus, I’m now 30 and training for my first ever marathon. Somewhere along the way, some questionable decisions were clearly made, with runner’s high having a lot to answer for. But every step of this journey is for a cause that truly matters to us.

EB is a painful and life-limiting genetic condition that causes the skin to blister and tear at the slightest touch. It is something incredibly close to our hearts because of our friend Lucas, who continues to face every challenge with a strength, humour, and resilience that puts our own struggles into perspective.

Last year, Lucas underwent surgery following a skin cancer diagnosis, a known complication for people living with Recessive Dystrophic EB. We are incredibly relieved to share that he has since received the all clear. While this was the best news possible, it reinforced just how vital ongoing research and specialist care remain for those living with EB.

That is why DEBRA’s work is so important. The charity funds vital research, specialist medical care, and lifelong support for individuals and families affected by EB, helping to improve quality of life now while working towards better treatments and ultimately a cure in the future.

During the 5am cold, wet, and windy training runs, and in the moments we question our life choices, we think of Lucas and everyone living with EB.
They face pain and challenges every single day without the option to stop. Their strength keeps us moving forward, one step at a time.

We would be so grateful for your support, whether that is donating, sharing our page, or simply cheering us on. Every mile we run is for Lucas and the incredible EB community.

Thank you so much for being a part of our journey.

Chloe and James 🦋