Celyn Harding-Jones, 36, says it’s getting increasingly difficult to do simple things like caring for her two small children.
For years, she’s lived with a rare brain tumour, a colloid cyst.
“I’ve had migraines since I was 13 – every week, sometimes three times a week. Sometimes I end up in the ER because the pain is too much,” Harding-Jones says.
But lately, the cyst has grown and she believes it’s making her even sicker.
“It’s ruining my life,” Harding-Jones said.
She says she’s had to quit her job because she suffers from many debilitating symptoms, including extreme fatigue and language issues.
“I don’t even respond to texts in the afternoon and the evening because I’m not sure what the words are, it becomes very difficult,” Harding-Jones explains. “And then there’s the pain, which radiates throughout my body.”
Harding-Jones says she is afraid of the prognosis. There is a risk the cyst could cause sudden death and she wants it removed.
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But her local doctors agreed they can’t perform the surgery.
In a letter provided by Harding-Jones, one Quebec doctor writes in part, “I’m concerned that the risks outweigh the benefits.”
A second Quebec doctor confirms that the surgery can’t be performed in the province without “a non-negligible risk of cognitive impairment.” The doctor goes on to say “I believe she should have a right to have this approach performed with minimal risk at his centre of excellence.”
The doctor is talking about the Weill Cornell Medicine Brain and Spine Centre where world-renowned Dr. Mark Souweidane is a specialist in removing rare cysts like Harding-Jones’, which happen in only about three people per million, according to the centre.
“From a patient’s perspective, they would like some control that they don’t have to be shuttled through an emergency avenue where they don’t get to select or pick and choose the faith that is being bestowed upon them, it makes perfect sense,” said Souweidane, director of pediatric neurological surgery at Weill Cornell Medicine and New York-Presbyterian.
“The natural evolution of this is (to) take care of it before it becomes a problem. You have to lower that risk profile with surgery, you have to have the experience to offer that to patients in a legitimate way and then you have to provide patients that access to get that and that’s hard and that’s going to be continually hard with something that happens with one in a million patients.”
Harding-Jones says she is aware of the risks.
“I’m going into this surgery that I don’t want – but I need – with no guarantees that my life will get any better, but with the guarantee that I won’t die suddenly and so that’s why it makes sense,” she explained.
In order to get the treatment, Harding-Jones needs two Quebec doctors to sign off and submit the request to have it covered by Québec’s Health Insurance Plan, RAMQ.
But Harding-Jones claims her doctors haven’t responded to her requests in months.
The McGill University Health Centre (MUHC) told Global News in a statement that Harding-Jones’ doctors can’t comment for reasons of confidentiality.
“We encourage any patient who has a complaint to contact the MUHC Office of the Ombudsman,” wrote Evelyne Dufresne, an information agent for the hospital.
Harding-Jone’s best friend has taken matters into her own hands, organizing a GoFundme campaign to cover the costs out of pocket.
On Friday, the initiative had raised more than $50,000 out of the $250,000 needed.
“This surgery needs to happen. Her life literally depends on it,” said Alanna Barnes.
Harding-Jones hopes she can soon get treatment, simply because she wants to fully be there for her children and for as long as she can.
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