As many of you already know my niece Alba was diagnosed with Rett syndrome in December 2022 after 18 months of hospital visits and tests. 

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.

Some recent positive news is that a gene therapy trial has been approved in the US and will hopefully start this year. We are also hopeful that a similar trial will be approved this year in the UK. This is huge news in the RETT community and we are hopeful that there will be treatment and a cure for RETTS in Alba's lifetime. With any luck in the not too distant future! But there isn't much funding.

Therefore Dan, Megan, Rupert and I have signed up to the Lake District Ultra Challenge where we aim to walk, jog, crawl, hobble our way around a 100km route... In one go!

Alba is the most glorious, happy little soul. 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. Thanks you.