SYNGAP1 is a neurological disorder characterized by moderate to severe intellectual disability that is evident in early childhood. SYNGAP1 often causes seizures, language delays, emotional and behavioural challenges, sleep problems, and motor delays.

About Lili

Lili was diagnosed with SYNGAP1 at the age
of 3, currently attending The Castle School in Donnington. She has mild autism, epilepsy, low muscle tone,learning disability and global developmental delay. Lili loves water but her pulmanory aspiration stops her eating or drinking orally since 5 years old and she is 11 this month.

About Swim for Lili

University of Edinburgh doing research on this condition and it requires funding. We are organising an event called ‘Swim 11’ , swimming 11 miles or more a month till 7th Oct 2023 conference for all UK SYNGAP1 parents & carers to raise awareness and funds for the research.

How are we doing 

Our community pool is 25 meters. 11 miles is 17.7kms. It will take 354 laps a month to achieve 11 miles target monthly. We both work full time and three kids - not enough spare time to do all the laps by ourselves. We would be grateful if many of us join our team to make it achievable. 

Anyone could join us by donating their swimming distance or donating few £’s. You could swim in your nearest pool and send us the swimming distance. No need to swim together or swim like pro, all levels swimmers are welcome.

We made 

15.76 miles on March

12.17 miles on April

11.21 miles on May

13.24 miles on June

29.39 miles on July

16.34 miles on August

Anyone willing to join us - please join our WhatsApp group

https://chat.whatsapp.com/Flu7NlCfmr5GUFFjTZQXzE

Thanks a lot for your support.