Amanda Rivait's family has a long history of battling Huntington's Disease (HD), a genetic disorder that results in the death of brain cells.
Surrounded by friends and family at the Chatham-Kent Civic Centre on Friday morning, Rivait was brought to tears recounting her grandmother's, mother's, and now her fight with the inherited disorder. She recently found out she had tested positive for the gene linked to HD.
"Why do we do these events... the answer is simple, to find a cure," she said. "So me and my five siblings and everyone else in the world haunted by HD will know they are not alone."
Carrie Young, left finishes a speech written by Amanda Rivait at the Chatham-Kent Civic Centre on Friday. (Photo by Michael Hugall)
Symptoms of Huntington's disease most commonly become noticeable between the ages of 35 and 44 years, but they can begin at any age from infancy to old age. According to the Huntington Society of Canada, one in 7,000 people has HD while one in every 5,500 people are at-risk of inheriting it. It also states that a child who is born to a family with the disease in its genetics has a 50 per cent chance of testing positive for it.
Researchers are still working to find a cure.
"We are so close to finding a cure. There are so many studies right now that give me hope for the future," said Carrie Young, who continued Rivait's speech as she fought back tears. "Right now I will fight and I will fight until a cure is found."
The impact of HD was felt through Amanda's story, however, they are not the only family living with the disease in Chatham-Kent. In an act of solidarity, those impacted by HD brought the idea for a flag raising ceremony to city hall on Friday. Acknowledging the local families affected by the disease is what moved the municipality to be a part of the ceremony, said Chief Administrative Officer Donald Shropshire.
"What we're trying to do is raise awareness and support the folks in our community who are actually battling this situation," he said. "We're happy to provide the support."
May is Huntington Disease awareness month across the globe, but this is the first time it is being recognized in the municipality.
The Huntington's Society of Canada flag will be flying outside of city hall throughout the month.