3 days ago
Ella-Rose waiting at the finish line to greet West Lothian man running half-marathon to support her
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.
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: '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.
"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.'
