A mom with a rare brain tumour has successfully undergone surgery that wasn’t available in Quebec, despite the province’s health insurance board (RAMQ) denying her coverage.
Celyn Harding-Jones is proudly donning her hard-earned mark of a warrior: an approximately three-inch scar next to her hairline that was obtained after a thousand-mile-long journey.
“I keep knocking on wood because I don’t even believe it myself but I’m back,” Harding-Jones said with a wide smile.
The mother of two is back to being able to enjoy life without constant and excruciating pain, brain fog and extreme fatigue that she suffered for the last seven years, landing her in the emergency room several times.
The fear of sudden death because of the cyst is now transformed into incomparable joy.
“I don’t have to think about that and I can focus about the things that matter in life,” Harding-Jones said.
Harding-Jones lived with an extremely rare brain tumour called a colloid cyst, one that neurosurgeons in Quebec admittedly don’t have the expertise to operate on, patient files show.
We first met Harding-Jones in May last year, when she was trying to obtain coverage for an ultra-specialized brain operation to remove the tumour that is only available in New York’s Weill Cornell Medicine Brain and Spine Centre.
Documents provided by Harding-Jones show the province’s insurance board first agreed to cover the specialist fees but not the hospital bill.
Then, when she appealed the decision, it offered no coverage at all.
“I would absolutely say that the Quebec government failed me,” Harding-Jones said.
So she turned to her community, raising funds to cover the fees through a GoFundMe followed by an online auction with goods donated by friends.
“We bit the bullet, we took out a little loan, my parents refinanced their house at a time when it’s not good for loans … and I just got on a plane and I went,” Harding-Jones said.
On Nov. 21, she underwent a successful surgery in New York in the hands of the world’s leading specialist in colloid cysts, Dr. Mark Souweidane, vice-chair of the department of neurological surgery and director of pediatric neurological surgery at the Weill Cornell Medical Center.
“She should be good for the remainder of her life,” Souweidane told Global News, while admitting Harding-Jones’ case was challenging.
“Her case was very complex, even for someone with three decades of experience like myself,” Souweidane said. “She represents something that even in my hands probably wasn’t doable 10, 15 years ago.”
While the fight for her health is over, Harding-Jones wants to continue fighting for others who need an advocate in the health-care system.
“I don’t believe in miracles but this was one. And I’m hoping to make another miracle happen for someone else,” Harding-Jones said.