Bryan Nye at the finish line of the London Landmarks Half Marathon.

"I took up running at the beginning of 2014 with a view to getting fit. I hadn't done much exercise since I left school in 1984 so, at the age of 46, I started running at my local 5K Park Run. With their support, it inspired me to go further and take on greater challenges such as local 5 miles & 10K runs culminating in my local half marathon.

Having made this first step I then wondered what I could do in terms of raising funds for DEBRA.

I wanted to put back into this organisation that had given so much support to our family. From the initial diagnosis of my daughter Mia's Herlitz junctional EB, through the important home visits that gave my wife Maxine and I the confidence in caring for our beautiful firstborn daughter at home, until Mia lost her battle with EB and died at the age of 20 months in 2005.

So, I contacted DEBRA and it was suggested I could do the Great South Run at Portsmouth; I happily took this on. During my training though I thought I could go further so I contacted them again.

I was so grateful for being offered a place in the London Marathon team of 2015. I count this experience as one of the best in my life.

I continue to run, adorning my DEBRA running vest at various events such as the recent London Landmarks Half Marathon.

Our family drew upon the research, care and support of DEBRA, and I will continue, like so many others affected by this condition, to raise funds and awareness for them for the rest of my life. I hope I can inspire someone reading this to take up a challenge and raise funds for such a great cause now or in the future.

For the young families that are still dealing with the effects of EB, my heart and thoughts go out to you."


Bryan, Maxine and their family have now raised nearly £15,000 for DEBRA.