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David’s West Highland Way Race - Ultramarathon of 96 miles on Saturday 20th June

When I heard about Ben and his diagnosis of childhood dementia through Kirsten who works with Ben’s mum, Alicia, I was shocked. Ben was diagnosed last year at just 4 years old.

Before hearing Ben’s story, I had never heard of childhood dementia, let alone imagined that a child could experience such a devastating condition. Like many people, I associated dementia with older age.

This cause resonates deeply with me because my family recently cared for Kirsten’s mum during the final stages of dementia. Seeing firsthand the impact it has on both the person living with the condition and the people who love them was incredibly difficult. I simply couldn’t believe that a child could face a similar diagnosis, or that parents would have to endure watching their child experience it.

To help raise awareness and funds, I will be taking on the West Highland Way Race – a gruelling 96-mile ultramarathon from Milngavie to Fort William. My goal is to complete the course in under 24 hours.

I am raising money for the MPS Society, a charity that supports families affected by Sanfilippo syndrome, the rare genetic condition that Ben has. Sanfilippo syndrome is one of the causes of childhood dementia, leading to the progressive loss of skills and abilities over time.

By supporting this fundraiser, you’ll be helping the MPS Society continue its vital work supporting children like Ben and their families as they navigate the challenges of this devastating condition.

Any donation, no matter how small, would be hugely appreciated. Thank you for helping me turn every mile of this challenge into support, awareness, and hope for families affected by Sanfilippo syndrome and childhood dementia.

Thank you for your support. ❤️

Ben is now 5 years old.

Just five.

At an age where life should be full of firsts, laughter, and endless tomorrows, Ben was diagnosed with MPS IIIA, a cruel condition often described as childhood dementia.

MPS IIIA is a rare genetic condition where the body cannot break down certain sugars. These build up in the brain, causing progressive and irreversible damage.

It doesn’t just make children unwell.

It slowly takes everything.

Their words.

Their memories.

Their ability to walk, to play, to recognise the people they love most.

Children with MPS IIIA are not expected to live beyond their teenage years.

So while other families are planning futures…

we are being forced to think about time running out.

The day we found out, our world shattered.

But Ben is not a diagnosis.

He is the happiest, most loving little boy, with a smile that lights up every room.

He deserves more than this.

He deserves time.

And right now, time is everything.