Teenager with rare skin disease hopes to complete mini-marathon challenge

Claudia Scanlon is raising funds for Debra Ireland, a charity that supports those with a condition known as butterfly skin.

RTE’s Miriam O’Callaghan with Claudia Scanlon and her mother Liz
RTE’s Miriam O’Callaghan with Claudia Scanlon and her mother Liz

A Dublin teenager with a rare and debilitating skin disease is undertaking a gruelling mini-marathon challenge to raise funds for others with the disorder.

Claudia Scanlon, 16, from Terenure has epidermolysis bullosa (EB), also known as butterfly skin, a condition that causes the skin layers and internal body linings to blister and wound at the slightest touch.

Claudia has a severe form of the disease, with 80% of her body covered in open wounds.

RTE’s Miriam O’Callaghan is supporting Claudia Scanlon
RTE’s Miriam O’Callaghan is supporting Claudia Scanlon (Conor McCabe/PA)

Despite her condition, she is now aiming to complete this year’s VHI Women’s Mini-Marathon in her wheelchair, to raise funds for EB charity Debra Ireland.

RTE presenter Miriam O’Callaghan is supporting her efforts, and has urged women from across Ireland to join in the 10k challenge.

Claudia is hoping to raise 10,000 euros for Debra Ireland when she attempts to go the distance on October 10.

The popular event is going virtual this year due to the coronavirus pandemic, with participants choosing their own routes across the country.

Claudia is bandaged almost from head-to-toe to protect her from everyday life and is fed through a tube in her stomach.

She is subject to frequent infections and has a greater than average risk of getting skin cancer.

Last year, the teenager and her mother Liz Collins completed the Women’s Mini-Marathon, with friends helping to push Claudia’s wheelchair.

This year she is going to attempt it unaided in her electric chair – a painful prospect due to the ongoing deterioration of her hands.

“Claudia’s hands have fused greatly over the last couple of years which is horrendous for her,” said her mother.

“She is a fantastic artist and make-up artist, and using her hands is at the heart of many of her passions.

“She was born with EB and although we were told this may happen, it is like somebody giving you a pair of hands and then taking them away.

“However, Claudia’s motto is ‘adapt and overcome’ and she never wallows in bad news. As a family we are all about doing what we can – especially the things that Claudia enjoys doing.”

Ms O’Callaghan said the teenager was an inspiration.

“I have known Claudia and her mum Liz for some time and I’m absolutely delighted to support them as they embark on this incredible and important challenge,” said the RTE star.

“They are both just amazing and I hope women all over the country will be as inspired as I am to join in Claudia’s 10k Challenge to raise vital funds for Debra Ireland.”

Ms Collins said this year represented her daughter’s only chance to complete the event unaided, as electric wheelchairs are ordinarily not permitted on the course.

“I have done the mini-marathon from the year that she was born, and always felt I was doing something special for her by completing it,” she said.

“I went around that 10k with Claudia in my heart and it was an amazing feeling. I remember weeping coming over the line that first year.

“Last year, she was old enough to come with us, and it was incredible for Claudia and all our friends.

“Being a parent of a child with a disability is quite a lonely place to be, but on that one day a year people are willing for things to happen.

“The mini-marathon is a very empowering day that celebrates the strength of women, which is why we are doing a virtual event and Claudia is asking women all around the country to do a 10k to raise 10k between us all.

“There is so much that Claudia cannot do but this is something that she can.

“Every person I have ever met with EB has this aura about them of strength, and they do whatever it takes.

“Debra Ireland have been amazing for us, especially during Covid. We have a family support worker, and the charity are ploughing as much funding as they can into research.”

To join Claudia in taking part in the mini marathon please visit http://bit.ly/2020MiniMarathon.

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