After years waiting for surgery, B.C. woman considering medically assisted death

A Victoria, B.C., mom with a rare, debilitating illness is desperate for help.

But the 37-year-old said after waiting years for surgery, she’s now considering medical assistance in dying.

“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 connective tissue.

“It’s bulldozed my life,” she said, adding that it took years to get an accurate diagnosis.

For her, it means wearing a brace to keep her neck stable. She also has constant joint pain and feels weak.

“I’m in terrible chronic pain,” she said. “The pain is horrendous.”

On bad days, she said it “feels like an axe in the back of my head.”

She can’t work, and spends most of her days in a medical bed at her home.

Despite pain medications, Ashcraft said her condition is getting worse. She wants surgery to stabilize her neck.

“Surgery, it can reduce my pain. It will also keep me much safer because it’s dangerous to have an unstable upper neck,” she explained.

She accepts that nothing will “cure” her EDS, but she believes surgery will make her more comfortable.

But she said she’s been waiting almost four years to see a neurosurgeon, and still has not received an appointment.

CTV News contacted the Health Ministry late Wednesday with questions about Ashcraft’s case, but two days later had still not received answers. However, CTV News did put some questions to the health minister at a public event Friday.

“Sometimes when someone has a specialized need it can be challenging, and those decisions about who and when they see a doctor or surgeon…are largely led by doctors, for good reasons,” said Adrian Dix.

“But that doesn’t mean there aren’t exceptional challenges and our heart goes out to anyone struggling through a serious condition.”

Despite CTV News contacting the Health Ministry earlier and requesting an interview with Dix, he said he hadn’t personally received information about the case.

He also said that his government has made a “profound effort” to reduce surgery wait times.

CTV News has also heard from other EDS patients and advocates both in B.C. and other parts of Canada. All have said there are not enough supports 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 Fundation in a email statement.

“For the neurological deficits they experience, including debilitating chronic pain, they are left to seek diagnostics and care abroad at their own expense.”

Ashcraft has looked into getting surgery in the U.S. and has been trying to fundraise, but said the cost is about $100,000. 

She would like health-care in B.C. to cover the surgery costs since she has been unable to get it here.

But with nowhere to turn and little hope, a struggling Ashcraft has been contemplating MAiD.

“I don’t want my family to watch me suffer like that for years on end,” she said.

“Death still kind of scares me, but what fears me more is that I’m starting to lose my fear of death,” she added.

Ashcraft’s teenaged sons don’t want to lose their mom.

“We don’t want that to happen and we have lots of things that we have planned out over the years,” said Eliot Guedes.

“It’s upsetting, some mornings when she’s really sad,” said her other son, Pearson Guedes.

“I tend to see her consume a lot of her medications robotically. I’m pretty sure that’s kind of how she feels.”

The family said what they desperately need is help.