A bit like going through a prolonged grieving process...

...That's how life is for a local man whom I met today, because his lovely little daughter suffers from Rett Syndrome. It's a genetic disorder which means that little girls (boys don't usually survive at all) gradually lose their abilities. All of the precious developmental achievements they make as babies - like walking and talking - gradually dissipate until they are profoundly disabled.

Little Carys, now three and a half, can stand, but cannot talk - and is a full-time responsibility for her parents and team of carers. And it's rough, with a very depressing and bleak outlook.

But amazingly, a cure could be around the corner. And this makes it all especially poignant for the thousands of parents of children with Rett.

Because, somewhere in a lab in Scotland, scientists have been able to reverse the effects of the defective gene that causes the syndrome. Potentially, it means that one day, there could be a cure and the chance for kids already affected to be "saved" from their dismal future.

No wonder parents like James, and his wife Bonnie (who live in Twyford) are so motivated to raise awareness - and money - to try and get this vital research speeded up and developed in time to save Carys.

If you're interested in supporting them, and finding out more, you can follow Carys on

facebook or on their webiste.