I’m from Nottingham and my parents had a very rocky marriage which ended in divorce. My three brothers and I lived with my mum. My father had a lot of mental illness and we weren’t aware he had Huntington’s until he passed away and his brain was sent to Cambridge for tests. In those days it was known as Huntington’s chorea.
I cared for my two brothers with HD. I had a lot of support from a social worker and a Huntington’s disease nurse. My younger brother got into trouble. He didn’t have a very good life but I stood by him because I knew what was wrong with him. I also got a lot of support from a police lady who was always there to help me and my younger brother.
I got involved with HDA when I decided to start fundraising and wanted to raise awareness. I am always there to help anyone. I would say to others there is help out there, but sometimes you do have to fight for what you believe and what you want.