Saskatoon boy, 4, heading to the U.S. for treatment of rare condition

The four-year-old boy has multiple food allergies and relies on a feeding tube.

Province to learn lessons from treatment after funding the out-of-country option

The Kot family are optimistically packing their bags to head to the United States to get treatment for four-year-old Kayden’s rare condition. (CBC)

The Kot family is optimistically packing their bags to head to the United States to get treatment for four-year-old Kayden's rare condition.

Kayden Kot has multiple food allergies and relies on a feeding tube to get nutrition. His medical condition has affected his development and he cannot walk or talk. The family is headed to Denver, Colo. on Saturday for a specialized treatment.

"We begin on Monday with a very detailed complex assessment of Kayden, where Kayden is at. This entails six or seven specialists from Kayden's team," Kayden's mom Sylvie Fortier-Kot said.

It will include multiple aspects, but Sylvie said the month-long treatment will focus on occupational therapy and feeding therapy.

"Obviously as a parent you just hope that your child can reach its full potential and we hope that the therapy is going to be successful," Sylvie said, adding they also understand it will take time.

"We know that he is on the right path and he is a really good, stable medical place right now for these therapies. Will we have to go back? That's a reality. Yes we probably will."

The Ministry of Health had initially balked at paying for the treatment holding the view that services available in Saskatoon had to be accessed. In January, the province had a change of heart and decided to fund the out-of-country option.

Sylvie Fortier-Kot says that Kayden is going in the right direction and making progress daily. (CBC)

The Saskatoon Health Region, along with the province, is sending a speech and language pathologist with the family for a few days of the therapy. The goal is to take lessons back to Saskatchewan to help with Kayden's needs and other children.

"She is going to be there for support for a few days during Kayden's therapy. And she is going to be at least able to connect with his team down in Denver," Sylvie said.

"I am just worried that is it going to be enough? I'm not sure it's going to be enough, especially with a child like Kayden, with all of his complexities."

The family held a fundraiser to help with the other expenses not covered by the ministry. Sylvie said the support of the community has helped a lot, but there is still a long road ahead.

"I know that Kayden is a work in progress. What keeps my head up is Kayden is going in the right direction, he is making progress daily," she said. "He can do it and he's a very strong, determined little boy."


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