Family raising money for son with rare genetic condition

Family raising funds for sons therapy A Saskatoon family is trying to raise funds to get therapy in the United States for their son who has a rare genetic disorder.

The family of a Saskatoon boy with a rare genetic condition are raising money to help continue his cross-border treatment.

Six-year-old Kayden Kot has cardio-facio-cutaneous syndrome (CFC), a disorder only known to be diagnosed in five other children in Canada.

People with the condition typically have intellectual disabilities, heart defects, a shorter stature and share other physical traits.

Kot has overcome his aversion to eating food thanks to therapy, according to his mother, Sylvie Fortier-Kot.

“Today, Kayden doesn't have that eating aversion,” Fortier-Kot said. “That psychology of him having a severe aversion to food is no longer there.”

Kot and his family have travelled to the U.S. for treatment not available in Saskatchewan. None of his recent therapy has been paid for by the province, the family said.

With more high-cost treatment and equipment on the horizon, including an $8,000 wheelchair, the family has set up a GoFundMe page.

Therapy has helped Kot learn how to sit, crawl and briefly put weight on his legs, according to the family.

The family plans to have their son complete more therapy in the U.S. in April to help him better connect to the movement of his body.

“Each time he comes home, you see something new out of Kayden,” said his father, Peter Kot.