Livingston resident embarks on a mission to support local schoolgirl diagnosed with genetic disorder
Livingston resident Owen Donoghue has taken it upon himself to run the Edinburgh half-marathon in a bid to raise funds for eight-year-old Ella-Rose Kennedy from Craigshill. Ella-Rose has been diagnosed with Friedreich ataxia, a debilitating genetic condition that affects the nervous system and cerebellum, impacting voluntary movements.
Ella-Rose, a P5 pupil at Howden St Andrew’s primary school, requires ongoing support including supplements, specialised therapies, home adaptations, and various aids and equipment as her condition progresses. With only one in every 50,000 people affected by Friedreich ataxia, the disorder results from nerve breakdown in the spinal cord, leading to a deficiency of sensory signals to the brain.
Parents Michael and Jenny Kennedy are hopeful for potential drug treatments currently undergoing trials for children with Friedreich ataxia. However, in the meantime, support options are limited, prompting Owen Donoghue to step in and raise funds to assist Ella-Rose and her family.
Owen, a father of six and a familiar face in the community, is determined to help alleviate the financial burden that comes with Ella-Rose’s condition. He has set a fundraising target of £4,000 and is actively training to cover the 13-mile half-marathon distance in Edinburgh. Despite his previous running experience, this challenge marks a significant milestone for Owen.
Expressing his motivation, Owen shared, “The family are going to need quite a lot of money as the years go on. I’ve known Ella-Rose since she was a child, and witnessing her deterioration has been heartbreaking.” With the support of his personal trainer, Owen is dedicated to crossing the finish line to ensure Ella-Rose can lead a fulfilling life to the best of her abilities.
To contribute to Owen’s fundraising efforts for Ella-Rose, donations can be made through his online fundraising page at www.gofundme.com/f/ellarose-supporting-her-fight-against-friedreichs-ataxia. Together, the community is rallying behind this noble cause, demonstrating the power of collective support and compassion towards those in need within our society.
In summary, the heartwarming story of Owen Donoghue’s selfless initiative to support young Ella-Rose Kennedy showcases the strength of community spirit and the unwavering determination to make a positive impact on a local family facing significant challenges. It serves as a reminder of the power of empathy and kindness in helping those in our midst who require extra support and care.