A DAD took part in the Stroud Half Marathon on Sunday to raise money for his daughter who suffers from a rare skin condition.
Mark Clubb's daughter, Naomi, suffers from Epidermolysis Bullosa (EB), a painful genetic skin blistering condition which, in the worst cases, can be fatal.
He was running to raise funds for the charity DEBRA, which funds research for people who suffer from the same disorder as Mark's daughter.
"We are extremely fortunate that Naomi has the mildest variation of this disease, EB Simplex," Mark said.
"For Naomi, this means she suffers with blisters on her feet during warmer weather or if her feet encounter any friction.
"A typical morning before setting off for school includes 30 minutes of lancing any blisters with a needle and then applying dressings to her feet to try and protect them as much as possible for the day ahead.
"We are lucky, for the worst cases this process can take hours."
There is also another young girl in Stroud who has a more severe version of the condition.
It is currently EB awareness week and as well as having taken part in the half marathon on Sunday, Mark is also taking on the Arctic challenge in the North of Sweden in February 2020 to raise money for the charity.
The challenge culminates in two nights of survival in shelters which are made from materials found for the first night, and by constructing a snow dome for the second.
"I know that whatever discomfort I encounter it's nothing compared to the pain that EB causes."
"As a family we have benefitted from the support and work of DEBRA," Mark said.
The charity conducts research to find effective treatments for the disease, and hopes to find a cure. It also provides care and support to improve the quality of life for individuals and families living with the disease.
Mark is also organising a silent disco at Stroud Brewery on November 9.
Forest Green Rovers are making DEBRA a charity Partner for a home match on December 7, and Mark has already received help from the companies, Hot-Headz Sauces, Kitsch Coffee and Winebar, Snow Business, Rise and Summit Climbing and Independent Audit limited.
"I am looking for 50 companies to donate £100 each. Specifically money will go towards a Community Support Officer for the Gloucestershire region," Mark said.
You can donate to DEBRA online through Mark's JustGiving page
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