A Quebec mother is raising funds to have her rare brain tumour removed
A Quebec woman living with a rare brain tumour for almost two decades is crowdfunding surgery expenses because she says the province won't cover the cost of having it removed in the U.S.
Celyn Harding-Jones, a mother of two young children, says she was diagnosed with the tumour, called a colloid cyst, when she was 19.
She says it's been growing for the last 18 years, putting her life at risk every day.
"Usually what happens in terms of progression and growth of a colloid cyst over 60 years…is the same amount of progression that's happened to me in the last five or six years," she said.
Symptoms such as extreme fatigue and memory loss have worsened over the past six years, forcing her to quit her job, she said.
Her deteriorating condition sent her on a journey to find a neurosurgeon who could perform an endoscopic surgery.
"I've seen multiple neurosurgeons. None of them have ever treated a colloid cyst in a surgery setting (…) that's like mine," said Harding-Jones.
Finally, she says she found a doctor in New York who had the right experience. The only catch—it was going to cost more than $170K (USD).
She says she applied to the Quebec health insurance board (RAMQ) to cover the cost, but was rejected twice.
In its reasoning, the RAMQ told Harding-Jones that endoscopic surgeries are offered at the CHUM. However, doctors at that hospital considered the surgery too risky.
"…They look at it [the surgery] as why introduce harm if it's not 100 per cent needed," she said.
"Their only other option here is to do the craniotomy, which carries much higher risks," she said.
To help with the cost of the surgery in New York, her friend launched a GoFundMe campaign, which Harding-Jones described as her "ray of hope."
As of Sunday, the fund had just surpassed the $100K mark.
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