Hi im Colin, Dad to three boys affected by Adrenoleukodystrophy. My middle son Alfie became worst affected back in 2021 and is now fully dependent and receiving palliative care.

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.

Leukodystrophies are usually degenerative, causing symptoms such as impaired mobility, vision, speech and hearing, incontinence,and loss of cognitive skills. In many cases, this sadly means a reduced or limited lifespan.

I am honoured to have secured my place in the next London Marathon in support of Alex TLC and the amazing work that they do! This is not just for my boys, but for all the boys and families who have had Leukodystrophy distroy their lives.

Thank you to all who can donate, no matter how much, it all helps!

Colin and Family xx