My name is Clare, my husband is Nick and we live in Warrington, Cheshire, England. Our first child, Gemma Danielle was born on 5 December 1998 and diagnosed with Sandhoff Disease at ten months of age. This webpage was originally set up as a means of contacting other families who had been affected by Sandhoff Disease. The disease is so rare that, at the time of Gemma's diagnosis, we could find no other family in England who had been affected by Sandhoff's.

Some of the information on the Site is a 'diary' of our time with Gemma, and I hope that sharing this will help others who may find us after finding themselves in a similar situation. We will continue to update the Site with news from our family, and would welcome friends old and new to keep in touch.