IMAGE's Director and contributing Editor Melanie Morris, along with Events Manager Sarah Murphy are currently braving some incredible and tough conditions to raise funds for Debra Ireland's Arctic Challange (more on that when they return) but another young warrior is also about to take on her own challenge to raise funds and awareness for the charity - fifteen-year-old Claudia Scanlon.
Claudia Scanlon (15) from Terenure is about to participate in her first ever mini-marathon to help raise awareness for the rare butterfly skin disorder Epidermolysis Bullosa (EB) which leaves 80 per cent of her body covered in open wounds. The teen has a more severe form of the condition, but despite this, is determined to take on the challenge with her mum, Liz - and some help from their friends.
What is EB?
EB is a rare genetic connective tissue disorder that can be extremely painful; an estimated 1 in 18,000 babies born in Ireland are affected and there is no treatment or cure. There are many genetic and symptomatic variations of it, but it essentially causes the skin layers and internal body linings to become hyper-fragile and blister and wound at the slightest touch.
And as one of only 300 people in Ireland with the condition, Claudia has to be bandaged almost from head-to-toe to protect her from everyday life. Despite this, she is all set to complete her first VHI Women’s Mini Marathon on June 2.
Every year since her birth Claudia’s mum, Liz Collins, has completed the mini-marathon to help raise awareness and funds for butterfly skin charity Debra Ireland, and this year, now Claudia is old enough, mum and daughter are taking on the challenge together for the first time. They have fantastic support in every respect and friends of the pair will be also helping to push Claudia’s wheelchair to the finishing line.
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Join #TeamDEBRA for this year's @vhiwmm! Entry forms in today's Evening Herald and a touching story about how you can make Claudia's dream of finising her first Mini Marathon with mum Liz a reality. Come on ladies, we need you! http://bit.ly/MiniMarathon2019 #vhiwmm #runwithClaudia #EBHeroes #cureEB #womensminimarathon #DoItForDebra
They are doing it to raise as much as they can for Debra Ireland, who provides day-to-day help and support for EB patients and their families. The charity also funds research programmes to find better treatments and possible cures for EB.
“It’s a fantastic feeling of empowerment being out there with all those women,” Liz said. “Since she was a baby Claudia and her dad Gary have met me at the finish line, but this year will be even better as she will be actually taking part in this great event with me.”
Participating in the mini-marathon will be a tough physical challenge for the teen, who will have to be mindful of the elements, even while in her wheelchair.
“Bumps on the road can cause problems, fatigue is an issue and being out in the heat when you are covered in bandages can be difficult, but we’re also hoping it doesn’t rain,” Liz explained.
“It will be a challenge," added Claudia. "But I will be doing it in my wheelchair, with my amazing mam and her mates, who will take it in turns to get me through the full 10km."
Yes, they won't be doing it alone; Mum and daughter have recruited a back-up team of friends and family to help.
“Ten good lifelong friends who know Claudia and know the struggle of living with EB will each take turns pushing her wheelchair for 1km.”
The pair are asking other women to join them on the Debra Ireland VHI Mini-Marathon team and make it the biggest group ever. “It would be so cool to have loads of DEBRA pals join me on the day and make it the biggest group we’ve ever had,” said Claudia.
Those who sign up to join Debra’s team for the VHI Mini Marathon on June 2 are invited to a great after party and anyone who raises €100 will be entered into a draw for prizes.
How can I help?
To find out more see debraireland.org/events or text BUTTERFLY to 50300 to donate €4 to Debra Ireland. Text costs €4 and Debra Ireland will receive a minimum of €3.60.