Sophie’s Story

Welcome to Sophie’s Story

Sophie was diagnosed with Batten Disease (CLN1) on the 13th of November 2024.

Our primary focus is to make Sophie’s life as fulfilled and comfortable as we possibly can. As a family we will endeavour to create as many memories with her while she is still able. Yes her life may not be as we had expected, BUT we will make sure that Sophie gets to live her own unique story.

FUNDRAISING - Sophie’s Stars

We have had people approach us re fundraising/donations to assist with Sophie’s care and to help us make her time as memorable as possible. We are so immensely grateful that people would like to support us through Sophie’s story. You are all Sophie’s Stars

At this time we don’t know what Sophie’s requirements will be and what type of equipment she will need. We will receive some assistance from NHS OT and physiotherapy, however we have been told that in some instances we may have to wait for upto 8 weeks before receiving it - in Sophie’s situation 8 weeks is a very long time to wait.

Any money raised for Sophie that is not utilised will be donated to the Batten Disease Family Association (BDFA) and/or Children’s Hospices Across Scotland (CHAS)