A mother in Victoria, BC, with a rare and debilitating illness, is desperately seeking help.
But the 37-year-old woman said that after waiting years for surgery, she is now considering medical care to die.
“I’m just suffering. So that’s … not living,” Rosie Ashcraft said in an interview with CTV News.
Ashcraft has something called Ehlers-Danlos Syndrome, or EDS, a group of inherited disorders that affect the connective tissue.
“It has shattered my life,” he said, adding that it took years to get an accurate diagnosis.
For her, it means wearing a hug to keep her neck stable. He also has constant joint pain and feels weak.
“I have terrible chronic pain,” he said. “The pain is horrible.”
On bad days, he said, “It feels like an ax in the back of my head.”
He cannot work and spends most of his days in a medical bed at home.
Despite the pain medications, Ashcraft said her condition is getting worse. She wants to have surgery to stabilize her neck.
“Surgery can reduce my pain. It will also keep me much safer because it’s dangerous to have an unstable upper neck,” he explained.
She agrees that nothing will “cure” her EDS, but she believes that surgery will make her more comfortable.
But he said he had been waiting almost four years to see a neurosurgeon and had not yet received an appointment.
CTV News contacted the Ministry of Health on Wednesday afternoon with questions about the Ashcraft case, but two days later it had not yet received any answers. However, CTV News asked some questions to the Health Minister at a public event on Friday.
“Sometimes, when someone has a specialized need, it can be a challenge, and these decisions about who and when they see a doctor or surgeon … are largely driven by doctors, for good reasons,” said Adrian Dix.
“But that doesn’t mean there aren’t exceptional challenges and our hearts are on anyone struggling with a serious illness.”
Although CTV News had previously contacted the Ministry of Health and requested an interview with Dix, he said he had not received any personal information about the case.
He also said that his government has made a “deep effort” to reduce the waiting times for surgeries.
CTV News has also heard from other patients with EDS and advocates in both BC and other parts of Canada. Everyone has said that there is not enough support for patients.
“Canadians with these conditions, whether they live in BC, Nova Scotia, Manitoba or Ontario, face the same challenges in accessing neurosurgical care,” said Sandy Smeenk, executive director of The ILC Foundation in a statement. e-mail.
“For the neurological deficits they experience, including debilitating chronic pain, they are left to seek diagnosis and care abroad on their own.”
Ashcraft has tried to have surgery in the United States and has been trying to raise funds, but said the cost is about $ 100,000.
He would like healthcare in BC to cover the costs of surgery as he has not been able to get it here.
But with nowhere to turn and with little hope, a struggling Ashcraft has been contemplating MAiD.
“I don’t want my family to see me suffer like this for years,” he said.
“Death still scares me, but what scares me the most is that I’m starting to lose the fear of death,” he added.
Ashcraft’s teenage children don’t want to lose their mother.
“We don’t want that to happen and we have a lot of things that we’ve planned over the years,” Eliot Guedes said.
“It’s annoying, some mornings when she’s very sad,” said her other son, Pearson Guedes.
“I tend to see her consuming a lot of her medications in a robotic way. I’m pretty sure that’s how she feels.”
The family said what they desperately needed was help.