Gerstmann-Straussler-Scheinker Genetic Prion Disease (GSS) is a rare and fatal condition that affects only 1-10 people out of every 100,000,000 people worldwide, and is a neurodegenerative disease that affects mobility, speech, memory and people generally end up bed ridden before death.

Zoe is 41 years old and lives with her fiancé Andrew and their two children Mille 8 and Harry 7. She lead an active, happy and fulfilling life until everything took a dramatic turn for the worse in 2019. In February 2019 Zoe noticed she had started dragging her foot and had tripped on a number of occasions, and her train of thought was not as it was. Having been to see her GP she was then referred to a consultant at the hospital for an appointment in July 2019. However, by March 2019 the falls were happening more frequent and the family decided to go to see a private consultant. The consultant said that he could rule out cancer, tumours, and MS, but acknowledged there was obviously something not right and to keep her appointment at the hospital.

Zoe continued to deteriorate quickly and her GP managed to bring her appointment at the hospital forward to early June 2019. It was then the family received a devastating phone call from a member of Zoe's late fathers side, saying they had spoke to Zoe at the weekend and had remembered that another distant relative of the family had had some similar symptoms and she said the disease was called Gertsmann Straussler Scheinker. Andrew immediately Googled the disease and their world fell apart as Zoe had all the symptoms, and there was no cure and it was a genetic disease. Andrew told the consultant of his fears, which they didn't think it would be the cause of Zoe's issues, due to her Father passing away from lung cancer at 61 and her Grandfather passing away at age of 59 without any diagnosed symptoms. Zoe was then sent for genetic testing to 100% rule this out, and possibly look at Parkinsons Disease.

Zoe's health continued to decline until she was finally given the tragic news on 29th August 2019, just a few days before her 40th birthday. Zoe was diagnosed with GSS. The family were informed the condition was terminal, and with anything from a few months upto a few years to live. Even more heartbreaking was the news her two children had a 50% chance of having the disease later in life, and could not be diagnosed until adulthood.

The past two years have been extremely sad and challenging for the whole family, and as I write this, Zoe is now receiving palliative care for her disease. We are raising funds for the family, who have went through unimaginable pain and suffering over two years and made huge sacrifices, and not having any medical or life insurances. Because the condition is so rare there are no charities we are aware of set up for the disease, and although we have tried to raise funds through participating in the GNR, Allendale Challenge and other events, unfortunatley they were all sadly cancelled due to COVID-19.

Andrew has asked us to mention the importance of taking out medical and life insurances, as you never know when or how your life may change as their's did. Thanks for taking time to read this, and donations would be greatly appreciated x