By Greg Nikkel
The Weyburn family of a former local resident are relieved that the provincial government has now approved the cost of therapy for young Kayden Kot, but the family will still have to cover their transportation and accommodation costs to the U.S.
Kayden, who is four, is the son of Peter and Sylvie Kot of Saskatoon, and the grandson of Tom and Nancy Kot of Weyburn, and great-grandson of John and Barbara Kot of Weyburn.
He was diagnosed with severe protein and food allergies, and is in need of further treatment and therapy in the United States.
“We now know that after an eight-month long wait, countless meetings within our health region, three applications, one appeal, we have finally been approved to attend the STAR Center in Denver, Colo.,” said Peter in a statement on Friday.
“We have no other details at this time. We are still waiting to hear back from the government on all Kayden’s other complexities and needs that cannot be met in our province. Kayden’s diet is a major part of this,” he added.
The Kots expressed disappointment that the approval took this long.
“Time is of the essence in this young child’s life, and at Kayden’s expense he will have waited eight months for the therapies,” said Peter.
Health Minister Dustin Duncan explained that the initial rejection for the treatment was made because therapists in Saskatchewan had been trained in the therapy that was needed for Kayden, and it was felt the treatment could be done here.
“If we can provide a service in Saskatchewan, there’s an obligation on the patient to utilize the service to the greatest extent possible,” he said.
“We had already paid for a prior trip to Colorado,” he noted, and the training of the therapists followed.
“What we approved was based on a new application,” said the minister, noting some new information had come forward from Kayden’s doctors and therapists in Saskatoon that Kayden had hit a plateau in his development.
The Ministry will pay for a one-month stay in Colorado for his treatment, added Duncan, and they will send one of the therapists from Saskatoon to observe the treatment and learn about how to better treat Kayden when he returns home again afterwards.
This approval is for this round of treatment, and if any follow-up treatment is needed, that would be a separate application, said the minister.
Duncan also noted he personally knows Peter and grew up with him, so he recused himself from making the decision on the appeal since he knew the applicant.
Also, this latest approval was made by the Ministry before it got to his desk.
“The approval was based on the application itself. I was able to phone Peter on Jan. 8 and pass the decision on to him directly,” said Duncan.
The family is still going ahead with a fundraising benefit on Saturday, Jan. 23, at the Cathedral of the Holy Family Hall in Saskatoon, from 5-10 p.m.
The event will include a buffet meal with a kids menu, and a multicultural program of musical entertainment and children’s activities.
Tickets are $25 for adults and $10 for children under 12.
Tickets can be obtained by emailing to [email protected], or [email protected].
In the statement by the family issued on Friday, Peter said of the support the family has received, “Thankfully we have many supportive friends, family, communities and coworkers who continue to help us be the best advocates for Kayden that we can be. We want to send out a huge thank you to all, we cannot express our gratitude enough.”
At four years old, Kayden is unable to walk or talk, and his parents say he would rather play with his food than put it in his mouth and swallow. He is still fed by a tube directly to his stomach.
In addition to the treatment in Denver, Kayden also was helped by the Anat Baniel Method facility in California, and by a pediatric neurologist and nutrition-dietitian specialist based in New York City.
The family has also had posted a GoFundMe page to help raise funds for their travel expenses to the U.S., accommodations and neuro movement lessons in San Francisco, California. As of Monday, this page had raised $9,531 for the family.
