When I was offered the chance to run London I jumped at the chance. I get to achieve a personal ambition, and raise money for a charity that most people do not know about, for a disease that, most people, well, do not know about. 

I may end up running this marathon on about 3 or 4 weeks training due to injury, but my suffering/pain/anguish on the day will be nothing compared to what sufferers of EB (Epidermolysis Bullosa) go through on a daily basis. 

My daughter Sophie goes to school with Poppy (pictured above with her family) and below is what my friend Kate sent me about daily life for their family. 

"Poppy is 11 and was born with the rare genetic skin condition Epidermolysis Bullosa (EB) or  Butterfly Syndrome as you may have heard. She has never experienced a day without pain in her life. Her skin is as fragile as a butterfly’s wings and can blister or tear away with the slightest knock or touch leaving burn like wounds. Currently there is no cure. 

We find it really difficult to talk openly and honestly about our story as we’ve spent the last 11 years trying to be positive about EB and stay strong for Poppy, hoping a cure can be found. When we speak the reality, that positivity becomes harder to project as there’s not much we can say about EB that’s good.

Poppy has suffered 11 years of daily traumatic dressing changes that can take up to 3 hours at a time. This consists of lancing and draining blisters, removing bandages that have soaked in to her open wounds, holding our breath hoping that this one won’t be so painful to peel off that she will refuse to carry on. She has daily medication to manage the pain and symptoms. The itch can be so bad at times that her only relief is breaking the skin and replacing it with pain. 

EB takes a hold of all of your body. It is heart breaking watching her mobility diminish and the use of her hands. The constant trauma to her skin has made her fingers contort so badly that even holding a pen is now challenging.

Poppy has to sit by and watch as her little brother and friends run round crazy doing all the things any healthy child would do. We feel helpless as we can’t stop the process. It has been 11 years of making it look easy from the outside and keeping a smile on our faces whilst telling people we are doing fine. You’d think we’d be used to it by now but the truth is you never get used to it. EB is relentless and she never gets a break. 

We are so proud of how our beautiful little girl deals with this on a daily basis. Despite the pain she is fun, brave, has a great sense of humour and always manages a smile even after the toughest of days. She is a true inspiration."

I find it an honour to raise money for all sufferers of EB in the hope that one day a cure can be found, they are all true heroes. Please give as much as you can afford to. 

Thank you. 

xx

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