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 afterthe 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, butthe Manitoba government stillhasn'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 navigationsystema machine that would allow doctors atthe Children's Hospital at the Winnipeg Health Sciences Centre todiagnose,and perform surgeries onchildren with epilepsy.

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

In 2017, Domino's Pizza Canada CEO Michael Schlaterdonated $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 thatmoney, but at least part of it was also supposed to go toward the purchase of the robotic navigationsystem, Western says.

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

Western says she has been joined byseveral neurologists and NDP MLA Lisa Naylorin 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.

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 aboutthe pediatric monitoring unit, the province deferred to theoriginal 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'steen 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."