Story
Thanks for taking the time to visit my JustGiving page.
My great niece, Evie, was born just over a year ago with a rare genetic disorder caused by a mutation of the CASK gene. Children with this disorder can suffer from a multitude of problems including intractable epilepsy, inability to feed or drink, inability to walk, low muscle tone, poor balance, global developmental delay, vision and/or hearing loss.
At the ripe old age of 66, I will be running the Edinburgh Half Marathon in May 2024 in order to raise as much funding as possible for this rare and little-known condition. It is thought there are about 40 cases in the UK. Funding for research into this condition is therefore scarce.
I hope that you will feel able to support me. Every little will help. Many thanks. For further information, please see link below.