“My wife has Huntington’s disease, just like her father before her. It’s not only incurable, but it takes people in the prime of their life. She can’t speak for herself, and so I speak for her — and everyone else who has this horrible disease.”
— Ray Bailey
Ray’s wife has Huntington disease. So did her father — no surprise there given that every child born to a parent with the disease has a 50% chance of getting it as well.
Having Huntington’s is like having the symptoms of Alzheimer’s, Parkinson’s and schizophrenia in one disease. Cells in parts of the brain die first. As the disease progresses, a person becomes less able to control movements, recall events, make decisions and control emotions. Eventually, the person becomes incapacitated and dies.
Ray and his wife know what lies before them. It’s been about 20 years since she first showed signs of having the disease and the official diagnosis — thanks to relatively new blood tests — came a few years later. Unfortunately, her father was misdiagnosed because these tests didn’t exist before 1993.
Ray’s wife can’t advocate for herself: “As the disease progresses, it incurs a lot of psychological and mood changes, and physical movements present themselves much like Parkinson’s.” And so Ray is her voice. He rejuvenated and presides over the local chapter of Huntington Society Canada and sits on the national board as a director at large.
“Because Huntington’s is an inherited disease, it carries a lot of stigma. It became obvious to me that I needed to advocate on behalf of my wife: to make this disease more widely known; to help fundraise; to assist the Huntington community; and to make things far better for my wife and others suffering from this horrible disease,” he says.
Family is at the heart of the Huntington Society of Canada, one of 16 national health charities working under the HealthPartners umbrella to transform the health of Canadians. People like Ray are not only caring for loved ones affected by the disease, but are also pulling together to improve the lives of all those with Huntington’s. Making a difference — “I am living proof that donating to HealthPartners works.”
The Huntington Society of Canada seeks to find a meaningful treatment for people with Huntington disease through research, service and education. Huntington is an inherited and fatal brain disorder causing symptoms ranging from uncontrollable movements to mental deterioration. It affects the life of one in every 7000 Canadians.
HealthPartners proudly supports The Huntington Society of Canada.