Winnipeg mother presses province on long-awaited epilepsy gear needed by her son

A Winnipeg mother continues to await the arrival of a specialized piece of machinery that will help treat her son, who is epileptic, four years after the head of Domino’s Pizza donated $2 million to the provincial government to acquire the gear.

“Our neurologist is trained in these procedures, and the doctors are here, but they have no machine to work with,” Julie Western said.

Julie Western has been waiting for four years for the device, but the Manitoba government still hasn’t purchased it.

Western’s son, Liam, was diagnosed with epilepsy when he was 15 months old and has suffered from seizures ever since. Liam, who is now 12 years old, has been on “numerous” medications but some epilepsy specialists have left Winnipeg because of a lack of support, Western says.

The next step for treatment, she says, is a robotic navigation system — a machine that would allow doctors at the Children’s Hospital at the Winnipeg Health Sciences Centre to diagnose, and perform surgeries on children with epilepsy.

However, she says, this equipment is not currently available in Manitoba.

In 2017, Domino’s Pizza Canada CEO Michael Schlater donated $2 million toward a special program for kids with epilepsy.

The machine has been paid for. The money is just sitting there waiting to be spent on this specific machine that was donated by Domino’s. It’s not even their money, so I don’t know what the problem is.– Julie Western

A two-bed monitoring unit has been built with some of that money, but at least part of it was also supposed to go toward the purchase of the robotic navigation system, Western says.

However, she says, the Manitoba government still has not approved the purchase of the machine.

Western says she has been joined by several neurologists and NDP MLA Lisa Naylor in pressing for answers from the province.

“The machine has been paid for,” Western said. “The money is just sitting there waiting to be spent on this specific machine that was donated by Domino’s. It’s not even their money, so I don’t know what the problem is.”

In a statement to CBC News, the Manitoba government said wants to support people with epilepsy and is grateful for the $2-million donation. However, it added, work on the monitoring unit and its “associated technology” is still underway.

Liam is shown here having his brain waves monitered at the Children’s Hospital at the Winnipeg Health Sciences Centre. (Submitted by Julie Western)

The statement did not provide any information about the delay nor offer a timeline for when it expects to purchase the machine.

When CBC News sought clarification about the pediatric monitoring unit, the province deferred to the original statement.

Meanwhile, Western says, Liam is running out of time to diagnose the trigger point in his brain and undergo a safe surgery.

Four years ago, Western says, they considered going to Toronto for an investigation into his seizures but that was put on hold. Doctors have told them that surgery is “vital” before Liam’s teen years, because after that the chance of recovery is much lower, she says.

“We’re just holding out hope that there will be a machine — and it’s not necessarily just for us,” Western said. “It’s for other families who have been waiting for this machine as well for a long time.” 

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