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Group hopes to start local Huntington’s support chapter

Tara Jeffrey Celine Payne wants to ensure no family in Sarnia-Lambton has to endure the horror of Huntington’s Disease (HD) alone.
Huntington copy
Celine Payne and her mother Yvette, who died of Huntington’s Disease last September. Submitted Photo

Tara Jeffrey

Celine Payne wants to ensure no family in Sarnia-Lambton has to endure the horror of Huntington’s Disease (HD) alone.

“I had no idea there were other people in the area who were affected by this disease until I started my first fundraiser,” said Payne, 27, who will host her third annual bowling event on March 14 in support of the Huntington’s Society of Canada.

“There is something more powerful about talking to someone who truly gets what you are going through… how truly impactful it can be to someone who may be feeling like I felt when I was 16: isolated and alone.”

Payne’s mother Yvette was diagnosed in her 20s but didn’t show symptoms of Huntington’s around age 35. The hereditary, neurodegenerative disease is often described as having ALS, Parkinson’s and Alzheimer’s at the same time. There are no drugs to slow or stop the progression, and, sadly, each child of a parent with HD is at-risk with a 50% chance of inheriting the disease.

“Not only was I a teenager in high school trying to figure out my future, but was also slowly losing my mother at the same time,” said Payne.

Her mother was moved to a nursing home soon after showing symptoms and remained there until she passed away in September, leaving behind Payne and her four brothers. She was only 48.

“I kept my emotions to myself and dealt with it my own way,” said Payne, who was left as her mother’s power of attorney. “I felt I didn’t have anyone to talk to who truly understood what I was going through.”

Noting the strong genetic link, Payne went through the stressful process of testing for the disease, which turned up negative. But she still worries about her younger brothers (you must be 18 to get tested).

Meanwhile, she got involved with the Huntington’s Society of Canada and attended an event for youth affected by the disease.

“I was fuelled with hope and the desire to do more for the HD community.”

She held her first bowling fundraiser in 2018 and raised more than $2,000, followed by another successful event last year, raising $4,000.

She’s hoping this year’s fundraiser can be used to launch a local HD chapter in Sarnia-Lambton.

“I have found more and more people affected in this community and we all, for the most part, have the same hopes in mind,” she said, pointing to a dedicated group of local volunteers.

“We just need the support of this community to show that this is a need in our area and how truly impactful it can be.”

The third annual Pot O’ Bowl will be held March 14 at Marcin Bowl from 7 p.m. to 9 p.m.

“It’s designed to be a stress-free night for anyone affected by HD or wants to support the cause,” she said. “It really does bring people together; I had someone from Port Huron who came the first year, who was affected by HD, but said there was nothing like this in his community.”

She spent 10 agonizing years watching her mother’s life slowly deteriorate and then arranged her funeral. But Payne said she is stronger for it.

“I wouldn’t wish that on anyone,” she said. “But, on the other hand, it has helped shape me into the person that I am today and made my relationship with my mother and my siblings stronger than it ever was.”


WHAT: 3rd annual Sarnia & Area St. Patrick’s Pot O’Bowl for Huntington’s

WHEN: Saturday, March 14, 7 p.m. to 9 p.m. (register at 6:30 p.m.)

WHERE: Marcin Bowl, Point Edward

DETAILS: Tickets are $30 (19+); $15 (under 19); includes bowling, drink vouchers, silent auction and mobile photo booth.

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