Four years ago, 3 year old Poppy started at our local community school nursery, alongside many of our own children. Meeting Poppy was the first time that we had come into contact with Epidermolysis Bullosa (EB) or Butterfly Syndrome, a rare and extremely painful genetic condition affecting the skin. If you have EB your skin is as fragile as a butterfly's wings; it blisters or tears away at the slightest knock or touch, leaving severe burn like wounds all over the body, eventually leading to skin cancer. Currently there is no cure.

Whatever other challenges we face in our lives, for the vast majority of families the daily struggles, both physical and emotional, of living with a condition like EB are completely unimaginable. 

Here's what Kate, Poppy's mum, says about living with EB:

"My daughter Poppy is 7 years old and has never experienced a day
without pain in her life. I find it really difficult to talk openly and honestly about our story as I’ve spent the last 7 years trying to be positive about EB and to stay strong for Poppy, hoping that a cure can be found. When I speak the reality, that positivity becomes harder to project as there’s not much I can say about EB that’s good.

There’s been 7 years of daily traumatic dressing changes that can take up to 3 hours at a time. 7 years of lancing and draining blisters. 7 years of holding my breath hoping that this one won’t be so painful that she will refuse to carry on. 7 years of daily medication to manage the symptoms. 7 years of trying to stop her from itching, because the only relief from the itch comes from breaking the skin and replacing it with pain. 7 years of sleepless nights. 7 years of watching her mobility diminish. 7 years of watching her hand dexterity reduce as the constant trauma to her skin has made her fingers contort so badly that even holding a pen is now challenging. 7 years of watching Poppy sit by
and watch as her little brother and friends run around crazily doing all the things any healthy child would do. 7 years of feeling helpless as I can’t stop the process. 7 years of making it look easy from the outside and keeping smiles on our faces whilst telling people we are doing fine. You’d think I’d be used to it by now, but the truth is you never get used to it. 

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

Poppy, her parents, Kate & Pete, and her brother, George, are truly
remarkable people. They have responded to the challenge of EB with courage, determination and an unbelievable strength of spirit. They are active members of our school community, taking part in the daily life of an infants' school. They haven't allowed Poppy's condition to isolate them; they get stuck in, participate, have a go, regardless of how difficult EB makes things that most people take for granted. They are fighters.

But Poppy and her family, and others like them, deserve more than just our admiration and respect. Nobody should have to experience the pain and heartbreak of this condition. What we all want, and what Poppy and the other 5000 sufferers of EB in the UK so desperately need, is a cure. With recent advances in gene therapies, finding a cure is a realistic prospect - but it will only become a reality if there is funding for continued research.

 On 15th June 2019, sixteen women from our community are therefore taking on the challenge of climbing Ben Nevis to raise money for Cure EB. Cure EB is an incredible charity that funds vital research into finding a cure for this cruel disease. 100% of ALL donations to Cure EB goes into funding research.

Many of us are complete novices and haven't ever done anything like this before - it's daunting, but we are a determined bunch. We are doing it to raise money not only to support Poppy and her family, but for everyone who is living with this horrendous condition. 

Please donate what you can, and help us make a difference.

Every penny counts.

http://www.cure-eb.org