To raise money for Debra Ireland, an organisation that offers support to patients living with the debilitating skin condition EB, 20 women went to the Arctic Circle where temperatures can plummet as low as -20C.
For the past two years, Debra Ireland has been the charity partner of Inspirefest. The importance of Debra Ireland’s work in providing support and relief to both patients living with a debilitating genetic condition and their families cannot be understated.
Debra Ireland helps people with a condition called epidermolysis bullosa (EB), a rare, inherited genetic condition that affects one in 18,000 babies born in Ireland.
The condition causes the skin layers (and, in more severe cases, internal linings of the body) to separate, meaning that even the slightest touch can lead to painful blistering and bleeding. It is said that the skin of someone with EB is as delicate as a butterfly’s wings. The resulting blisters need to be lanced and changed daily in a process that can take as much as three hours. The disease is, currently, incurable.
Yet a whole world of possibilities can open up if the funding can be drummed up to fuel vital research in the disease. And, for those affected, looking forward and thinking positively is at times the only light in a continued struggle with what a consultant dermatologist at Our Lady’s Children’s Hospital in Crumlin has called “easily the most debilitating and devastating disease [they] have ever seen”.
As part of a fundraising effort for Debra Ireland, in March 2018, a group of 20 women (including Inspirefest founder Ann O’Dea) headed to northern Finland to take on the Debra Ireland Arctic Challenge. The women came from a range of professional backgrounds – HR management, primary school teaching and professional consulting, to name a few – but none could be said to have done anything like battling the elements in the Arctic Circle for five days.
The women had to source their own water, build their own fires, sleep in tents and ski cross-country extensively, all in freezing temperatures that would plummet as low as -20C.
It was unquestionably both physically and psychologically taxing, but the presence of Liz Collins – a family patient ambassador for Debra Ireland whose daughter Claudia is living with EB – was humbling. “[Claudia is] my inspiration,” Collins said in videos captured during the Arctic Circle challenge, “because this is nothing compared to what those kids go through every single day.”
“Liz and other mothers like her were the inspiration for this whole idea,” added Judith Gilsenan from Debra Ireland, “Having a mum here who has a child with EB is pretty incredible. She keeps us grounded and keeps us close to the reason we’re all here.”
Liz and her daughter Claudia joined O’Dea on the Inspirefest stage to discuss the trip and the money raised – a cool €150,000, which will go towards the work that Debra Ireland do and towards finding a cure. Liz described the trip as “fairly mind-blowing” and “extremely inspirational”.
“You kind of would have to be there to get the whole impact of it, but what we 20 women achieved is just phenomenal, and the money that was raised … will be just incredible. We’re moving mountains,” said Liz.
Liz’s daughter Claudia, who is 14, spoke eloquently about the challenging realities of her condition. “No one at this age wants to go through anything like [this],” she began. “It’s hard to be who you want to be.”
Claudia still tries to maintain as much normality as possible. She recently attended Taylor Swift’s Croke Park concert and had for a while been doing ballet until it became too difficult with her condition. “I love still doing dancing around the house … I have kind of your average teenage life, I guess.”
“It was just amazing what [the 20 women did] … it’s so important to raise awareness of Debra Ireland, to get it out there into the world,” Claudia continued.
“With the amount of money that we raised, hopefully someday [we can] find a cure and make no other child go through this.”
To sign up for the Debra Ireland 2019 challenge or learn more about the organisation’s work, you can head to debraireland.org.