A Derry dad has launched a desperate bid to give his young daughter a good quality of life after she was diagnosed with a rare muscle disorder.
Mark Walker told how his 10-year-old Izzi was diagnosed with Juvenile Dermatomyositis – a rare autoimmune disease where the body’s immune system attacks its own cells and tissues.
The disease affects around three in every one million children and causes weak muscles and impaired mobility.
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The Derry youngster was diagnosed with the condition six years ago but her bravery and determination to get the most out of life has been inspirational for those around her.
So much so that Mark and co-worker John Storey are now set to talk on the Strabane-Lifford Half Marathon next month.
“There’s been some trial and error with her treatment which has been very challenging at times but she been so positive throughout the process,” Mark said.
“We try and manage the condition to give her the best quality of life possible and it’s just about not putting her under pressure, setting realistic expectations and taking breaks if she feels tired.
“Her mobility has been up and down over that time, we’re an active family and we try and get her out and about as much as possible.
“She loves the climbing wall at the Foyle Arena which is a great way of keeping her active and she always has a broad smile on her face when she’s there.”
Mark explained how he first had concerns about Izzi when on a family holiday to Spain six years ago.
“We first noticed something when we were on holidays in Lanzarote when she would get tired when we were out and would ask to be carried,” Mark added.
“Later that year she began to struggle with going upstairs and was in pain when she walked so we took her to the doctor and after a number of visits he suggested it could be Juvenile Dermatomyositis.
“After a lot more analysis and scans she was diagnosed with a number of treatments to try and improve her quality of life.”
Three years ago 'Izz’s' uncle David and friend Noel Smyth ran four half marathons in four days to help raise funds to combat the condition and with the lifting of the Covid restrictions and the return of large scale athletic events, Mark decided it was time to step up to the plate.
“The past two years with Covid we haven’t done much so decided this year I would challenge myself to do a half marathon,” he explained. “We hope to raise a lot of money and get it to the right places.
“I would have been quite active when I was younger, I played rugby and went to the gym.
“Although I’m not as fit as I was then I’ve been enjoying getting back out running.
“When my brother did four half marathons in four days, I did the last leg with them with little training which was tough going but I’m preparing properly this time and have already done Omagh so hopefully I can improve on my time in Strabane Lifford.
“I’ve been out with my running partner John Storey a few times a week and I’ve done some training with Star Running Club, I’m really enjoying it and I’m hoping to keep at it when this race is finished.”
The funds raised from Mark’s half marathon efforts will go towards the Cure JM Foundation - an American organisation that funds research to improve treatment for the condition and the Foyle Down Syndrome Trust.
The half marathon, which is hosted by Derry City and Strabane District Council, takes place on May 15th.
Those interested in taking part in the limited 1,200 person event can sign up HERE.
You can donate to Mark’s fundraising campaign online at HERE, or there are also donation buckets in Fitzroy's Bistro in Derry.
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