3 Mums, 1 Mountain, 1 Mission

Three mums, one mountain, one mission – to cure EB!

On 20th June, three EB mums – Kate, Sharmila and Clara – will set out to climb Mount Olympus in Greece over the course of two days, with an amazing group of supportive friends and family, including Rachel, a trustee of Cure EB. The majority are not experienced climbers, but they’re willing to take on the 9570ft challenge to raise funds for Cure EB!

Kate, who came up with the challenge, led a team of fundraising cyclists on an epic ride from Paris to London two years ago, but she says since then life has only got harder for her daughter Poppy, 14, who has RDEB.

“Now a teenager, she is facing the most challenging part of her life to date. EB has really taken its toll on her. Dressing changes now take 5 hours a day. She is always in pain, dampened down by so much medication that she simply can’t get through the day without. Her mobility continues to decline and she spends more time in her wheelchair than not these days.

“Fusing of her fingers has accelerated and it feels like we are swimming against the tide to keep the use of her hands. Her peers are growing into young adults with independence that she so desperately craves too, but this condition keeps her held back. Always needing a carer, never alone just to be. It’s devastating as a parent to witness and feel so helpless.”

Sharmila, founder of Cure EB, who decided to join Kate on the challenge is worried her knees won’t hold up but as she says “If Sohana can live with the pain of RDEB every day, I can climb this mountain.

“What’s amazing is that all the climbers are self funded, so every penny raised comes to Cure EB, where 100% of donations are spent on research as our costs are underwritten.”

Clara, mum to Darcy, 7, who has RDEB says “Darcy is fearless, funny, adventurous, and a complete little daredevil. She loves life and tries to live it as fully as possible, despite EB making every single day a fight no child should ever have to face.

“Darcy is my reason why. She is the reason I am climbing Mount Olympus. This climb is for her, for our family, and for every child living with EB.”

The team have been in training over the last few weeks, on their own and in small groups, and will come together for the first time in Thessaloniki ahead of their climb.

The training has been tough, the climb will be tougher, but they’re motivated by the suffering of children like Poppy, Sohana and Darcy who are challenged by EB everyday. For those with EB, there is no summit and no finish line until we find a cure.

“We are constantly racing against time in the hope that better treatments and ultimately a cure can be found before this cruel condition takes even more. Thank you for supporting us and helping us climb for something so much bigger than a mountain.”