Amber walked when she was 13 months old and from then on, she never stopped moving. Even when other things went wrong for her, she lost her speech or her hands stopped working, her little legs never let her down. 

It's amazing when you can't speak or point, how being able to move about enables you to say so much. She used to go to the snack cupboard and just wait there when she wanted crisps or to her bed when she was tired. She could even come and find me if she was sad or scared.

I remember the first time I realised that she was going to lose this as well. I was holding her hand walking into school with her brother on my hip and her legs buckled and she couldn't get back up. I remember what I said too-and I've said it to her a thousand times since, in all the  days of falling that have passed; falling and getting up again and again and again, until eventually, she just couldn't get up anymore and I couldn't get her up onto her feet anymore either.

There is currently no treatment that will enable Amber to walk again but one day, there might be. When Rett Syndrome has been reversed in mouse models of the disease, the recovered mice go on to move about normally and freely, like other healthy mice. Rett Syndrome Research Trust UK intensively funds research projects working aggressively to translate this lab progress, into real take home treatment, not for mice, but for our children. 

This is why I'm going to do this crazy challenge, even though I am not convinced that it's physically possible for someone with rickety hips like me. When I get stuck, or tired or scared, I will remember all those days I told Amber to 'just walk' and keep my hope fixed firmly on the possibility that one day, she will.