SASKATOON – The parents of a little boy with a rare eating disorder are holding their breath this week, hoping the province will say yes to intensive therapy in the U.S. Kayden Kot, 4, has been virtually unable to eat his entire life. He started vomiting up milk just a few weeks after being born.
His mother Sylvie Fortier-Kot says it was severe.
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“When I say severe, I mean 20-25 times a day,” Fortier-Kot told Global News. “There was failure to thrive, he was not gaining weight,” she said, adding they tried numerous formulas and procedures, and nothing worked.
Other than “failure to thrive,” there’s never been an official diagnosis of his condition.
The Saskatoon Health Region has recommended that Kayden travel to the STAR Center in Denver, Colo. to get intensive therapy for a month, to help him continue on the path to eating normally. But so far the province has refused to cover the $14,000 bill. Therapy is available in Saskatoon, but only on a very limited basis.
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Fortier-Kot says Kayden could get about one session per week here – in Denver he would get two per day. His family would also get training.
“He’s already four, it’s only going to get harder,” she said.
“It’s critical that we do it now, it’s critical that we take him for intensive therapy.”
Otherwise the family fears he will be on feeding tubes the rest of his life.
“He has global developmental delays … he’s four, he still doesn’t walk, he’s not talking, and the biggest difficulty I guess is with feeding,” she said.
“Kayden does not orally intake any food.”
Unlike most people, she said, he’s never been able to enjoy eating – something most of us take for granted.
“When we think about eating, it’s something we do all the time, but with Kayden it’s also sensory, the texture of the food, the feel of the food … there’s a lot of trauma that has occurred, because he’s never had a positive eating experience,” she said.
“Everything that has gone in for him has always come out.”
“He associates food with something negative, a painful thing, excruciating pain.”
There is an arms-length review process for cases like Kayden’s, and the province has agreed to speed it up, so the family should find out soon if the province will cover the costs.
Over the years the family has spent about $100,000 dollars trying to help Kayden, with assistance from family, friends and fundraisers.
“I will not stop advocating for Kayden, he’s a sweet sweet little boy,” said Fortier-Kot. “He has suffered a lot, he has suffered more than some have suffered in their lifetime, in four little years, so he deserves the chance, the opportunity to learn these skills,” she said.
The family has set up a gofundme page to help with the cost, and are planning a steak night fundraiser on Feb. 6 at The Thirsty Scholar.