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Teen with 'butterfly skin' to raise €10k in mini-marathon

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Claudia Scanlon after the VHI Women’s Mini Marathon last year with mum Liz Collins and supporters of EB charity Debra Ireland. Photo: Eoin Fegan

Claudia Scanlon after the VHI Women’s Mini Marathon last year with mum Liz Collins and supporters of EB charity Debra Ireland. Photo: Eoin Fegan

Claudia Scanlon after the VHI Women’s Mini Marathon last year with mum Liz Collins and supporters of EB charity Debra Ireland. Photo: Eoin Fegan

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 80pc of her body covered in open wounds.

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.

RTÉ presenter Miriam O'Callaghan is supporting her efforts.

Claudia is hoping to raise €10,000 for Debra Ireland with the October 10 event.

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

Risk

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 try 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."

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