Manon Desbiens

Meet Manon Desbiens. Two of her sisters and her brother had Huntington’s disease.

Manon Desbiens does not suffer from Huntingdon’s disease. But her mother, two of Manon’s sisters and her brother all died of the disease before age 60. “The statistics apply to us. Each child born of a parent with the disease has a 50% chance of inheriting the defective gene. My mother passed on the disease to three of her six children. Barely a month has passed since my brother died,” she says, the pain still in her voice.

For a long time, Manon’s family had no idea that half of its members were afflicted with this neurodegenerative genetic disorder that affects muscle coordination and causes cognitive decline. Then one day, the Huntington Society came into their lives. “I can’t even begin to tell you how helpful those meetings were; learning about the research, gaining insight and receiving encouragement. Until then, we thought we were the only ones in this situation,” says Manon.

“My family and I were in the dark and not functioning well at all until the Huntington Society came to the rescue.”

manon desbiens

HealthPartners and the Huntington Society have played an active role in the lives of the Desbiens family. “My sisters and brother went to summer camp every year. For them, it was a very liberating experience. They always came back happy and fulfilled. And for us, the caregivers, these organizations offered us respite trips so we could have a chance to recharge our batteries and take a break from all the responsibilities that weighed on us, continues Manon.

Unfortunately, a cure is still a long way off. Research is vital and offers the only hope that the next generation will fare better than its predecessors.

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