A Livingston man will be taking on the Edinburgh half-marathon to raise money for a Craigshill girl who’s been dignosed with a debilitating progressive genetic condition.
Eight-year-old Ella-Rose Kennedy has Friedreich ataxia – a disorder that causes damage to the nervous system and cerebellum, the part of the brain that deals with voluntary movements.
Owen Donoghue, 44, whose son is in Ella-Rose’s class, is taking on the 13 miles challenge to raise funds that will go directly towards supporting the schoolgirl who attends Howden St Andrew’s primary.
Owen, a dad-of-six himself, is raising money to help with supplements, specialised therapies, home adaptations and other aids and equipment that the P5 pupil will need as the degenerative disease progresses.
One in every 50,0000 people are affected by Friedreich ataxia, in which nerves in the spinal cord break down leading to a deficiency of sensory signals to the brain.
The condition is caused by an abnormal gene and insufficient levels of a protein named fraxatin, parents are unaffected because they only carry a single pathogenic variant, but those affected by the condition inherit variants from each of their parents.
Ella-Rose’s parents – Michael and Jenny – are pinning their hopes on drugs, that are currently being trialled on children, becoming available in the near future to help their daughter.
But current support options are limited, with Owen determined to help out by raising funds to help with whatever he can in the meantime.
Owen said: “The family are going to need quite a lot of money as the years go on.
“I used to go to school with her dad Michael and I’ve kent Ella-Rose since she was a bairn, so I’ve seen her deteriorate. To get that news is devastating.
“My wife own’s a café, Devilish Diner, which is just up the road from them, that I work in.”
Owen has been pounding the pavements around his home in preparation but the Edinburgh run is more than double the distance of his previous challenges. He has set a target of raising £4,000 to help Ella-Rose.
“I do a bit of running and have done 10Ks but I’ve never done a half-marathon, so this is a big step-up,” said Owen. “This will be the furthest distance I have ever ran, and every step I take will bring us closer to helping Ella-Rose lead the fullest life possible.”
“I hadn’t done any training over Christmas and when I tried to go back out I didn’t get very far,” Owen admits. “But I’ll get there. Normally I do about 5K a couple of times a week.
“I have a personal trainer, Mel from local company FoxFit, who’s helping me.”
Owen’s taking on the run on Sunday, May 25 and has already raised over £640.
You can find the online fundraising page and donate at: www.gofundme.com/f/ellarose-supporting-her-fight-against-friedreichs-ataxia?
Alternatively you can scan the QR Code below.
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