My Story

Childhood Dementia

Seven years ago our son, Alexander, was diagnosed with Niemann-Pick Type C disease (NPC).  This very rare genetic disorder, and similar neuro-degenerative conditions, are collectively known as Childhood Dementia. NPC is life-shortening and there is no cure at the moment. The degenerative nature of the disease follows a very similar pathway to Motor Neurone Disease (MND).

The disease has changed Alexander's life completely.  Now aged 15, he goes to a special school in a wheelchair, he's tube-fed, he has lost his speech, can't communicate and has very limited comprehension. Alexander needs assistance with every aspect of his life.

So, I'm running the London Marathon in 2026 to raise funds for "Niemann-Pick UK", a charity that supports and advocates for families like ours. Importantly, they're also in constant dialogue with clinicians and drug companies trying to find a cure. Gene therapy is the route to combat this devastating disease and the recent, amazing, breakthroughs in gene therapy treatment for both Huntington's disease and Hunter syndrome give us hope.

I'm also running to raise public awareness of Childhood Dementia.  Whilst everyone has heard of MND,  very few folk have heard of NPC or the term Childhood Dementia.  
In Scotland, the number of children who die every year from Childhood Dementia is the same as those who die from Childhood Cancers.

I set my target at £2600 as this was the average amount raised on a London Marathon charity place last year.  Help me be above average (for once in my life!😀).

Many thanks for your donation,

David & Alexander xxxx.