Parents fighting Sask. gov’t for child’s ‘urgent’ therapy

REGINA – The parents of a four-year-old boy with severe health challenges are frustrated the provincial government won’t cover the cost of a therapy they’ve been told is urgent.

Sylvie Fortier-Kot and Peter Kot say their son, Kayden, suffers from several issues that have prevented him from being able to eat. Correcting the problem requires intensive feeding therapy, otherwise he may require a feeding tube for the rest of his life.

“The longer you wait, the harder it is,” Kot said.

The best treatment available, Fortier-Kot says, is at the STAR Center in Denver, Colorado, and would come with a $14,000 bill before factoring in travel costs. It would require the family to travel there for one month, with Kayden receiving two different therapies each day.

“If we want this child to eat … it’s critical go now.”

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The parents say the therapy is critical to Kayden’s development; his has no official diagnosis, only classified as “failure to thrive.”

In July, the Saskatoon Health Region wrote the parents to say local health providers could offer therapy sessions, but “cannot match the intensity of therapy” at the STAR Center, recommending Kayden receive treatment there.

“We’re very disappointed that after all the headway we made, we got that recommendation, to then be turned down,” she said. “If we want this child to eat … it’s critical go now.”

Fortier-Kot says the government paid for a similar therapy when Kayden was just one-year old, before he suffered a major setback.

Since then, they’ve spent about $100,000 out-of-pocket and with help from family, friends and fundraising.

Government funding

The Opposition NDP is calling on the government to pick up the tab for Kayden’s therapy, saying refusal to pay for the most effective treatment is “just plain wrong.”

“How can’t the government find $14,000 for this desperately needed treatment?” asked NDP leader Cam Broten.

During Wednesday’s question period, both Premier Brad Wall and Health Minister Dustin Duncan said the government prefers in-province therapy services and touted an appeal process for a review of the family’s request.

“I know there’s a disagreement over the intensity of the therapy … that’s why we have an arms-length review process,” Duncan said. “It really comes down to whether within the public system we can provide it, (rather) than just basically saying to people, ‘Find where you want to go and we’ll pay for it regardless.’ ”

Last week, another Saskatoon family went public after being denied funding to treat a rare genetic disease in their three children.

Duncan argued that because the kids are over the age of five, the treatment – at more than $400,000 per year, per child – may not even be effective.