Follow our story here : Luna's Journey

Hello, we are Sam and Danielle and we are raising funds in support of our beautiful 2 year old daughter Luna who was diagnosed with Syngap1 Syndrome on the 22nd July 2024.

100% of funds raised will to go the Patrick Wild Centre in Edinburgh who are at the forefront of research to find treatment for this genetic condition that was only discovered in 2009. Luna is one of only around 100 people diagnosed with this rare condition in the UK.

Luna's Story

The process of discovery has been a long road since Luna turned 1yrs in November 2022 and we made the first medical enquiries into her developmental delay.

Luna presents as a typical Syngapian with the following issues as a result of this condition: Intellectual disability, Epilepsy, Global Development Delay, Autistic traits, challenging behaviour, sensory issues, severe communication delay/non-verbal. Luna is not yet able to walk. This is not an exhaustive list of struggles she faces everyday and we face as a family.

The determination and strength Luna shows everyday is what gives us the strength to carry on each day as she has already achieved so much despite having to work so hard for every little bit of progress. There is currently no cure or treatment for this syndrome but there is research happening in Edinburgh. We are going to be contributing to this fundraising effort as we hope for medical miracles to happen in Luna’s lifetime! . Our mission is to ensure that Luna has the most fulfilled and happy life as we raise money to not only raise awareness of this debilitating condition, but contribute to a treatment or cure for Luna and future generations. Please help us to achieve this! Thank you.