Fyrish Flyers net 'butterfly girl' boost with epic fundraising challenge for Debra charity in support of families affected by recessive dystrophic epidermolysis bullosa
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A TEAM of netball players inspired by the bravery of a "butterfly child" with a rare blistering skin disorder have raised more than £1100 to help children with the condition.
Isla Grist (12), of the Black Isle, has Recessive Dystrophic Epidermolysis Bullosa (EB) which leaves her skin so fragile that even a slight knock results in blistering and tearing requiring immediate medical intervention.
Members of the Fyrish Flyers – including her mother, Rachael – completed a series of challenges during the coronavirus lockdown to raise awareness and funds for Debra, a national charity which supports families affected by EB.
Collectively, they ran 3485km, cycled 2526.53km and scored 8826 netball goals during their one-month challenge.
In an online fundraising appeal, they highlighted the impact of EB on Isla who has to have her dressings changed three times a week, attends hospital appointments in Inverness and Great Ormond Street Hospital in London, endures a throat stretch every two months to enable her to eat without choking and has already had more than 40 operations under general anaesthetic.
"EB affects every part of Isla's life but despite everything, she is truly amazing in her attitude and outlook on life and with everything that she has to endure," the club said.
"She takes on as much as she can and probably more than she should. There is currently no cure for EB.
"We see Isla's strength, determination and positivity, and the zest for life that touches all those who meet her. We are humbled and inspired by her courage, compassion and consideration for others, as she battles on against ever increasing challenges.
"Ultimately we’d like there to be a cure so that she can win the battle against EB and continue to shine her light into the lives of others."
Mrs Grist, of Bogallan, said the club has 40 junior and senior members scattered from Inverness to Golspie who normally train at Dingwall Academy once a week.
"We decided that because we were unable to train or practise due to the coronavirus pandemic we would do a challenge," she said.
"We felt it was one way of keeping fit and also keeping the communication channels open.
"We also decided we wanted to raise money for the charity Debra which supports families like ours affected by this condition."
They set a collective running/walking target of 970km, the equivalent distance of travelling from Land's End to John O'Groats, a cycling target of 3365km, the distance covered during the Tour de France, and scoring 6478 nets, the number scored at the Netball World Cup held in Liverpool last year.
"To finish the challenge, we climbed up to Fyrish monument as it felt an appropriate thing to do," Mrs Grist said.
"We are now thinking of doing another challenge as we are not going to be able to play netball for a while."
