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THE EIGHT-YEAR-OLD FROM CRAIGSHILL WAS DIAGNOSED WITH FRIEDREICH ATAXIA 12:40, 03 Jun 2025 A caring Livingston dad raised over £1,800 by running the Edinburgh Half-Marathon for a young girl

in the community who’s been diagnosed with a debilitating progressive genetic condition. Owen Donoghue, 44, took on the challenge to help eight-year-old Craigshill girl Ella-Rose Kennedy who

has Friedreich ataxia – a disorder that causes damage to the nervous system and cerebellum, the part of the brain that deals with voluntary movements. The dad-of-six was at school with

Ella-Rose’s dad Michael, and now his own son is in Ella Rose’s class at Howden St Andrew’s Primary. The money will go directly towards supporting the P5 schoolgirl who was at the finish line

as he completed the Edinburgh Half-marathon. READ MORE: West Lothian residents urged to help shut down supplies of illegal vapes across region 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.

Article continues below 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: “It’s more than double

the distances I’ve ran before but it went really well and wasn’t as bad as I thought it would be. “The weather was decent as well and it was quite straightforward. “Wee Ella-Rose came along

and was at the finish line. Her family are going to need quite a lot of money as the years go on. “I couldn’t have done it without Mel from FoxFit training me. Article continues below

"I’d also like to thank the local community who have been mega-supportive and the businesses around my wife’s Devilish Diner café that helped me raise money – Spark, MGK Hair Design,

Daisy Drop In, and the Tower Bar.” READ MORE: Treatment hope for eight-year-old Livingston schoolgirl with progressive genetic disorder DON'T MISS THE LATEST NEWS FROM THE WEST LOTHIAN

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