I'm raising money to help my friends Dan & Meg's little girl Alba, who has recently been diagnosed with Rett syndrome, this is their story below.

As many of you know our daughter Alba was diagnosed with Rett Syndrome in December 2022, after 18 months of hospital visits and tests. This has come as a devastating blow and we're still figuring out how to move forwards as a family.

Rett Syndrome affects around 1 in 10,000 babies. Most children and adults with Rett Syndrome are unable to speak, walk or use their hands. Breathing problems, feeding tubes, seizures, anxiety, gastrointestinal and orthopaedic issues are common. Research has shown that people with Rett Syndrome do not have brain damage. They know and understand much more than their bodies allow them to show – but they are locked in, trapped by a body that cannot obey signals from their brain.

Now feels like the perfect time to try and raise some money to help find a cure for Rett. A paediatric gene therapy trial has just been approved which is HUGE! These trials obviously take time, and when successful it'll be even longer before treatment may be available in the UK. We want to raise as much money as we can to bring a cure even closer for our baby girl. We felt that if we're going to ask you all for money, we need to do something that's a bloody challenge! So we're going to be hiking 100k through the Lake District in one go. We'll have rest, snack and meal stops but aside from that we'll be walking through the day and night to reach the finish line. 

Alba is the most glorious, happy little soul (most of the time!) and is such a social butterfly. Those of you who have met her will understand, those who haven't - you're missing out! Please help us and Alba by donating what you can. And thankyou!

Dan, Megs and Alba xxx