“This has been one of the toughest years of our lives.”
Zachary Engen’s family wants to know why they have to travel from their home in Saskatoon to Toronto for specialist care that used to be available in Saskatchewan.
“This has been one of the toughest years of our lives,” said Engen’s mother, Alyssa Weber, from the Saskatchewan Legislative Building on Wednesday.
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The 16-year-old was diagnosed with eosinophilic esophagitis in 2020. The condition causes inflammation and contraction of the esophagus, making it hard for the young man to even swallow water and forcing him to rely on a gastrostomy tube to eat.
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The last pediatric gastroenterologist in Saskatchewan closed up shop in 2023, forcing the family to travel to Toronto for care. They were first referred to Calgary and Montreal for treatment, but specialists in both locations were unable to take on another patient.
Weber said the family has been forced to pay thousands of dollars for out-of-province care, and while there’s a monetary cost of leaving her two children in Saskatoon while Engen gets that care, she said the separation has also taken a toll.
For Engen, who has autism and “cognitive impairments,” she said it’s hard to explain to him why this is all needed.
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“He doesn’t understand why he can’t be like normal 16-year-old boys,” Weber said, her family by her side. “It just keeps getting worse and worse and medication is not helping him anymore.”
The family wants the province to attract new doctors so that Engen can get treatment closer to home, something Premier Scott Moe says they are working on.
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The province, through its Health Human Resources (HRR) action plan, is “working very hard” to recruit three pediatric gastroenterologists, Moe said during question period Wednesday, adding the Saskatchewan Health Authority is close to hiring two.
“Since that human resources plan has been in place, we’ve lost two pediatric GI’s and have none in the province right now,” countered Opposition Leader Carla Beck.
Minister of Health Everett Hindley insisted hiring “is a priority” for the government, adding the province is using “every avenue it has” to attract a pediatric gastroenterologist to Saskatchewan.
But until then, the family struggles against a dire financial reality.
“We have been reduced to bottle drives, GoFundMes, we’re doing a supper, just to try and raise money to get back to Toronto for May 7,” said Engen’s grandmother, Cynthia Schneider.
Two plane tickets will be covered this time around by Hope Air but that won’t cover seats for all the family that Engen needs with him. It also doesn’t cover the cost of hotels for the course of their stay, or food.
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Schneider expressed frustration over the costs and the toll this has taken on her daughter’s family, including the grandchildren.
As the family spoke with reporters Wednesday morning alongside Beck and critic for rural and remote health Jared Clarke, Engen was held by his father, at times crying and at times turning his head from those gathered while he held on to a pillow. His family wore T-shirts showing a younger Engen when he was first diagnosed.
“We have a children’s hospital. This government needs to smarten up and get these doctors here for these kids,” Schneider said, gesturing to Engen.
“Look at this boy. Can you not see what this is doing to him?”
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