Alfie’s fundraiser for Alex, The Leukodystrophy Charity

Alfie bowler is raising money for Alex, The Leukodystrophy Charity

Carsington Waters Half Marathon · 21 June 2025

Alex, The Leukodystrophy Charity (Alex TLC) was founded in 2004 by a mother whose two sons had been diagnosed with leukodystrophy. She recognised the severe lack of information and support available and wanted to make sure that no one had to face leukodystrophy alone.

Story

I’m running this half marathon with my Aunty Claire in recognition of my brave friend Will D to raise money for Alex

When I was in Y5 at my primary school (2018) my classmate and friend Will became poorly. At the time we really didn’t know just how serious it was, unfortunately Will was diagnosed with ALD.

Leukodystrophies are rare genetic disorders that mainly affect the white matter of the central nervous system (ie the brain or spinal cord). They affect people of all ages and backgrounds, most notably children. In many cases, this sadly means a reduced or limited lifespan.

Soon after his time with us at primary school changed, Will lost his sight and his ability to walk as this awful disease took hold, but Will NEVER gave up, he still wanted to be a part of our lives and make memories with his friends at school. As a class we spent our last 18 months at school together making these memories with Will and his family.

Now aged 17 years old Will is STILL fighting, still showing his bravery and determination. We all miss having Will be a part of our secondary school life but we never forget him, he is always the person I think of when I start to struggle. He is a WARRIOR!

Your donation will help Alex TLC continue to provide the best support possible to those affected.

Thank You

Donation summary

Total
£720.00
+ £162.50 Gift Aid
Online
£720.00
Offline
£0.00

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