Evie is a 10 year old girl from Melrose in the Scottish Borders. She is a happy, vibrant, sociable girl who adores animals, playing with her babies, chatting to everyone she meets and giving the best cuddles ever.

When Evie started school she began to experience issues with her coordination and movement. At first it was thought that this was related to her eyesight and she had various test over the following two years. In July 2021, Evie began to have seizures and by the end of September these were becoming more frequent and an EEG (electroencephalogram) confirmed epilepsy. The family felt they had an answer and medication appeared to control and stop her seizures. Unfortunately, later that year genetics testing confirmed that Evie actually had the extremely rare CLN5 variant of Batten Disease and she joined just 4 other children in the UK with this variant of the disease. Batten Disease is a neurodegenerative condition and the CLN 5 variant has no current treatment or cure. Although Evie was part of a clinical trail in London recently, the outcome of this is still unknown as the trial is in its infancy. Evie currently suffers from progressive eye sight failure, epileptic seizures and progressive cognitive and mobility regression. Ultimately this condition will significantly shorten her life. As a result in Evie requires medical equipment and for her home environment to be adapted to suit her needs. We are raising money to support Evie and her family to be able to provide this equipment for her and make her home a safe place where she can play, socialise and receive therapeutic support. Any monies raised will also go towards providing the family with respite, care and experiences to make memories as a family before Evie’s health deteriorates further.