Walking 60km (yes, all in one go) will be an endurance test, no doubt about it. Even if the scenery is pretty and the company is awesome, it'll be hard going and a long day. But I'll do it for my daughter Amy. Because a single day of physical discomfort is nothing, really, compared with what her life is like.

Amy is five years old and likes dolls and pop music and chocolate buttons. But she isn't like any other five-year-old because she lives with Rett syndrome, a severe neurological disorder caused by a single faulty gene that affects mainly girls. It affects everything: she can't stand or walk, can't talk, can't even use her hands to point or wave or play. Everything is a struggle: sitting, eating, even breathing normally. She has to deal with a long list of medical complications, including heart problems, a curved spine and frightening seizures.

We don't know what the future holds for her. Unless an effective treatment is found, she will always need round-the-clock care and will be reliant on the people around her for everything.

But although Rett syndrome is unimaginably devastating, there is hope. Not 'hoping for the best' kind of hope, but well-founded hope, based on some extraordinary scientific evidence.

The year that Amy was born, researchers discovered that the symptoms of Rett syndrome could be reversed in mice. They found that the mice could be restored to normal. Since then, dedicated scientists have been pursuing every avenue they can to find a way of reversing Rett not just in mice but in girls like Amy. They believe that Rett syndrome could be the world's first reversible brain disorder.

But this won't happen without ongoing research. And for the research to continue, it needs money. Rett Syndrome Research Trust UK funds this ground-breaking research and works in partnership with the scientists who are relentlessly focused on the day that Rett syndrome becomes a thing of the past.

For Amy and other girls like her, and for families like ours: that day can't come soon enough. Please help us get there.

For more about Amy and living with a complicated child, take a look at my blog, Living with Rett Syndrome.