My Story

Ben, Luke and Becky are swimming  1 mile of Lake Windermere on Saturday 13th June 2026. That is the same as 64 Lengths of a pool. We are doing this to raise money for Reverse Rett and in honour of Scarlett our daughter/sister and the many other children and adults affected by Rett Syndrome. 

Rett syndrome is a rare genetic condition that affects around 1 in 10,000 people but mostly girls. Scarlett was diagnosed with Rett Syndrome at the age of 2 1/2 after a year or so of numerous tests to figure out why she wasn't walking or crawling. From this point forward we saw Scarlett lose the ability to speak and use her hands as well as to never be able to walk or sit unaided. Scarlett has demonstrated such strength, resilience and determination to not let Rett syndrome define her and uses non verbal ways like her eye gaze to communicate, be cheeky and show how clever she. She is smashing mainstream secondary school and is driven to take her GCSES.

Because of Rett syndrome Scarlett has had to battle epilepsy from the age of 9, curving of her spine, which she underwent major spinal surgery on in 2023 and a dislocated left hip that required surgery on too. She faces daily struggles,  pain and discomfort and is reliant on others 24/7 for everything. However she keeps on pushing herself, is an inspirational teenager who amazes us and we want to push ourselves and try to swim a mile.

 We are raising money for Reverse Rett who are a charity that puts your donations into science and research and trials into medication, treatments and possible cures for Rett Syndrome, such as the exciting Gene therapy.  

Any donations you can give will help us push through this challenging swim to get to the end and is greatly appreciated.