Her family is requesting provincial support to participate in a clinical trial for Vanishing White Matter Disease at the University of Utah.
A young Vancouver woman with a rare, terminal illness, and her mother, are appealing for public support after the federal government refused to help them cover the costs of participating in a U.S. clinical trial.
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They say the province also failed to step up to support them over the years.
Jayda Suttie, 18, has vanishing white matter disease, a hereditary illness that prevents the body from making myelin, a substance that protects nerves in the brain. As it progresses, the disease can cause vision and motor skill loss, seizures, vomiting and comas.
Jayda was first diagnosed in 2016 at the age of nine. With no recognized treatment, life expectancy is between a few years and several decades for those who face onset during youth.
“In all the years that Jayda has had this, we haven’t had any support from the Ministry of Children and Family Development, and it’s been so crazy,” said Jayda’s mother, Linda. “We don’t even get medical transportation supports, like nothing, and it’s so hard, as you can imagine, for a single parent to manage all this.”
Linda says she was contacted in April 2024 about a drug study out of the University of Utah. Run by Calico Life Sciences, the clinical trials aim to test the drug’s ability to stabilize the disease and possibly extend the lives of those diagnosed with it.
It would require Jayda and Linda to travel to Salt Lake City 11 times over two years. Three telehealth visits would also be conducted.
When the trials are underway, the mother and daughter will need support to cover the cost of flights, hotels, meals and other expenses.
A single mom on income assistance, Linda says she can’t afford the $100,000 to $125,000 it could cost to participate.
Linda applied to Indigenous Services Canada for funding under Jordan’s Principle, a federal program to ensure First Nations children receive supports and services.
The program is named after Jordan River Anderson, a boy from Manitoba’s Norway House Cree Nation who spent two years in a hospital because the federal government and province couldn’t agree on who was responsible for his care.
Jayda, whose father is Cree, has Indian status.
Dr. Eva Moore, an adolescent medicine physician at B.C. Children’s Hospital, wrote a letter of support saying the trial provided a “unique opportunity for Jayda since this is a very rare condition and little is known about how to treat it.”
She added that “studies like this may be a way for her to get the newest treatment and have additional care and support from experts in the field.”
But on Sept. 18, the family received a response from Indigenous Services Canada denying their request. The letter stated “there is no existing provincial or federal government service or program that offers funding for individuals to travel outside of Canada for medical trials, nor do any government programs provide financial assistance for the related requested travel expenses.”
“A social worker helped me do the paperwork for the Jordan’s Principle request. A coordinator said that they were escalating it up to head office in Ottawa. It was being sent to Ottawa, and then I received an email back from them denying the help,” said Linda.
“They say that we can appeal, but we just don’t have legal help or anything to do the appeal.”
In an emailed statement, Indigenous Services Canada said they would not comment on Jayda’s case due to privacy concerns. The B.C. Ministry of Children and Family Development said they, too, could not comment on individual cases for the same reason.
The setback is the latest in a long road for the family that has seen Jayda nearly lose her life twice, once in 2016 when she was knocked unconscious and in a coma for a week, and earlier last fall after a complicated dental surgery.
The family spent 2½ years, from 2021 to 2023, living in an SUV after their co-op moved to evict them because they couldn’t pay an insurance deductible for a bathroom that had flooded five years before.
Linda said she and Jayda are now living in a facility run by Jewish Family Services.
Linda and Jayda still have hope that someone will support them in enrolling for the trial. Jayda dreams about becoming a DJ and going to school for music. She is enrolled at the Sarah McLachlan School of Music, where she spends most days after school.
“Even though I am terminal, I haven’t stopped trying to live my dreams,” she said.
David McCann, a human rights advocate who was recently appointed to the Order of Canada, has offered to cover the cost of airfare for Linda and Jayda. He has sent emails to a number of MPs in the Vancouver area to try to gather additional support.
“I wrote letters to a number of MPs and retired prime minister (Jean Chretien) and said, ‘Look, this is a matter of life and death,” McCann said. “This is the only hope that they have, the clinical trials, and there’s a program in place to help people like this.”
Despite this, McCann said he had been met with little more than silence. He said MPs, such as Taleeb Noormohamed and Hedy Fry, said they could not help Jayda because she doesn’t live in their ridings.
“Why can’t our government, with all the resources they have, do more?” asked McCann.
“I know that if those four MPs I contacted called the minister and said this is wrong, or I want you to reconsider, they would. I just don’t think anybody took the time to do it.”