I have decided to run the London Marathon on the 23rd April 2023 in aid of a wonderful charity, Action for A-T, after being inspired by both my beautiful nieces, Hattie (9) and Violet (6) who are living with this condition.

What is Ataxia-Telangiectasia?

Ataxia-Telangiectasia (A-T) is a rare and complex childhood disease that affects the nervous system, immune system and a variety of other systems in the body. Ataxia, or loss of coordination, is normally the first and most obvious sign that a child has A-T. Children when they start to sit and stand up may appear clumsy or wobbly, often swaying from side to side when sitting or standing. This doesn’t usually affect their learning to walk, but they will usually be unsteady on their feet. The coordination problems will soon start to affect speech, making it hard to pronounce words. Over time also eating and swallowing are also affected, as these require considerable muscle coordination. It also affects eye-movements, though vision itself is unaffected, impacting activities like reading. A-T is also characterised by Telangiectasia, where widened "spider" like veins often appear in the corner of the eyes. 

There is currently no cure for A-T and no treatments to slow down or stop the progression of this devastating disease.