Schoolboy Aidan Macgruer, from Thurso, has smashed a 516 mile bike ride in support of families affected by Huntington’s disease, a rare and incurable condition with devastating symptoms.

Back in January 2022 the eight year old challenged himself to complete a virtual North Coast 500 by cycling through Thurso and surrounding countryside. He gave himself a year to do it -then powered to the finish line five months early, collecting a whopping £1800 for Scottish Huntington’s Association along the way.

Friends and families gathered to cheer Aidan on to the finishing line in Thurso on Saturday, 3 September – which was conveniently set outside an ice cream shop where he was presented with a free celebration cone.

“I’ve loved doing the cycle,” said Aidan. “Everyone was very supportive and I got plenty of waves and cheers when I was out on my bike. They all knew I was raising money for Scottish Huntington’s Association and I received loads of donations from people I’ve never even met.

“There were days when the weather was bad and I wasn’t keen on going out but I was determined to complete the 516 miles. There was also a day when I was stung by a wasp and another day when I fell off my bike on a dirt track. But my mum, dad and stepdad all kept me going and encouraged me by coming out on their bikes too.

“I chose to help people with Huntington’s disease because it’s a rare condition that not many people know about. All the money I’ve raised is being donated to Scottish Huntington’s Association.”

Scottish Huntington’s Association is the only charity in Scotland dedicated exclusively to supporting families with Huntington’s disease. In Scotland there are around 1100 people with a diagnosis while a further 4000 to 6000 others are at risk of having inherited the faulty gene that causes the incurable condition.

People with Huntington’s disease develop complex and severe symptoms. Over time, the brain stops working properly, leading to a loss of control over movement and causing uncoordinated jerky movements and a loss of ability to walk, talk, eat and swallow. Cognition – thinking processes – is affected, causing early onset dementia and impaired decision making that reduces ability to organise and plan. Mental illness may also develop, including depression, anxiety, mood swings, behaviour changes and, in some cases, psychosis.

To compound the devastating toll on families still further, each child of a person with Huntington’s is at 50/50 risk of having inherited the disease too.

Scottish Huntington’s Association Chief Executive Alistair Haw said: “Congratulations Aidan! What a brilliant way to increase awareness about Huntington’s disease and raise so much money. Aidan’s efforts will go a long way to help us reach every family with the lifeline services they need and to continue our work to ensure that every family, regardless of where they live, has access to specialist support. We thank him, his family and everyone who donated – and we can’t wait to see what Aidan does next!”

Mum Debbie who joined Aidan on many of his bike rides, said: “It’s been a great experience and Aidan has really enjoyed having people cheering him over the past eight months. It’s been an adventure for the whole family and we’re all incredibly proud of him.”

So what is Aidan planning now?

“I’m going to keep on cycling – I’d love to do 200 miles in one month. That would be a great challenge!” he said.