Saskatoon family denied funding to help support son with rare disorder

After six months of waiting, a Saskatoon family has been denied help from the provincial government for their severely ill four-year-old boy.

In July Sylvie Fortier-Kot submitted an application seeking approval from the provincial government for out-of-country therapy for her son, Kayden. This week, the family received confirmation that their request had been denied.

"I'm kind of in shock, and I'm pleading with [Health] Minister [Dustin] Duncan and Premier Brad Wall to please review this case," Fortier-Kotsaid from her home.

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Fortier-Kot explained that her child failed to thrive as a baby. He was vomiting breast milk up 15 times per day. The boy was almost one when he was diagnosed with multiple food allergies. By then he had developed such a fear of vomiting he refused to let any food near his mouth or nose.

Now, at four years old, he is unable to walk or talk and relies on a feeding tube that is implanted in his stomach.

"It's not just the feeding. It's not that he can't walk. It's several things," his mother said. "He needs different inter-discipline levels of therapy."

According to Fortier-Kot, the feeding, speech, and occupational therapists Kayden needs are hard to come by in Saskatoon.

She said the family will now gather information to make another application, through the local health region, for treatment for the boy.

"We're going to have to ask the Saskatoon Health Region to resubmit another recommendation, which is time consuming," said Fortier-Kot. "Then we're going to send it in to the ministry in hopes that we can get the therapy approved."

She said there will be some new information but it's basically the same application.

"I'm pleading with him [health minister Dustin Duncan] to please expedite the case. Our original application was in in July ... we have waited six months, now we're denied. We don't have that time; Kayden doesn't have that time," she said.

Health Minister responds

On Friday, the health minister explained the reasons for rejecting Fortier-Kot's application.

According to Duncan, officials felt there were services available in Saskatoon thatthe family had not used or not used fully.

"That would have been the basis of why the original denial was put in place by the ministry," Duncan told CBC News.

He added that a review committee checking the healthy ministry's decision and affirmed that officials had acted appropriately in denying the application.

However, Duncan said it would still be worthwhile for Fortier-Kot to resubmit Kayden's application to the ministry.

"There may be more information," he said.

The health critic from the Opposition NDP, Danielle Chartier, said the ministry's denial shows a lack of compassion by officials.

"It makes no sense," Chartier said. "All of Kayden's medical team including doctors, occupational therapists, speech language pathologists everybody thinks Kayden needs intensive therapy in Denver."

Kayden's mother, Sylvie, shared two separate letters from health care providers who've worked with Kayden since infancy. Both letters express support for sending him to the U.S. to get the intensive the therapy.

In the meantime, the family has undertaken a fundraising effort to get to Denver. A benefit is planned at Holy Family Cathedral Hall on Jan. 23 for Kayden.

A gofundme page called "Kisses and Cuddles for Kayden" has also been set up.