The mother of a Bonnyrigg teenager with a rare condition has praised her work colleague who is doing the Edinburgh Half Marathon to raise money for a charity fighting the disease.
Alison Donald’s daughter, Lasswade High pupil Ellie Donald (17), has mitochondrial disease, a debilitating and life limiting condition.
When Alison told her Tesco Express Bonnyrigg colleague Jack Allan, he decided to raise money for The Lily Foundation, which aims to raise awareness of the condition as well as money to tackle it. There is currently no cure for this disease.
Alison said: “When Ellie got the diagnosis four or five years ago we hadn’t heard of it. So that’s why we want to get the word out there. It isn’t curable and it can be fatal.
“It’s a mixture of different illnesses. I think Ellie’s condition is quite slow in progressing. She had symptoms at the age of seven and had every test you could imagine.
“She had quite a bad seizure at primary school and had to get taken by helicopter to hospital and was put into an induced coma. But it took another three or four years before she got a diagnosis. It’s quite hard to recognise and diagnose. Ellie’s condition is quite rare, they have never seen her code before. We have got to keep her well as we don’t know what’s in store for her.
“She can’t even walk to school now. She also gets overnight feeds as she is just not hungry. She has no appetite.
“I see it as little batteries in her body not working properly. It can affect your heart, kidney, brain, everything.”
Speaking about Jack’s half marathon effort on May 26, Alison added: “It’s amazing. I’m chuffed he is doing this for Ellie. We just want to make people aware of it and help the charity, as they are looking for a cure for this condition.”
Jack (22), currently studying MA Economics and Accounting at the University of Edinburgh, said: “I work part time at Tesco with Alison, and over the last three years we have became really good friends. She shared with me that her daughter has mitochondrial disease. I recognised pictures of Ellie from school, when Alison shared them,.
“After learning about the disease and the lack of information or awareness about it, I decided to try and change that.
“Therefore, I am running the my first half marathon. I intend to use my social media platforms to raise awareness. So far I have raised £450 through my just giving page, with an additional £140 in donations from a charity bucket at my work.
“We have just received the great news that for one month every Tesco Express in the Edinburgh Group will donate their charity donations to my just giving page, with the hope of additional fundraising.”
The Lily Foundation was founded in Lily Curtis’s memory, having lost her battle to Mitochondrial Disease at just eight months old. The charity aims to give hope, answers and support to the many other children and families that face the challenges of this disease today.
To donate, go to - www.justgiving.com/fundraising/jack-allan3.