The parents of a five-year-old Manitoba boy with a rare terminal illness say they credit the community for stepping up in their efforts to get him medication to improve his quality of life.
Kalya Krentz Dupont and Mario Dupont told Global Winnipeg that their life was upended when their son, Leo, was diagnosed with Niemann-Pick disease type C, a rare — and ultimately fatal — progressive neurological illness.
Krentz Dupont said when Leo was two, he began showing signs of a distended belly, combined with vomiting. Despite seeing a general practitioner followed by a number of specialists, the parents weren’t given any conclusive diagnosis, only speculation as to what might be happening with their son.
“We still saw the distended belly as the years went on, but we had a number of specialists say it was OK, so we kept on living,” she said.
“It was at four years old that we started to notice some changes in Leo’s movements. That’s when we started to see some tremors. We also started to notice changes in his gait pattern, in his walking.
“All of this was signs of the Niemman-Pick type C disease that Leo was diagnosed with at the end of June 2025.”
Mario Dupont said after receiving the diagnosis, the family learned just how rare the disease is — to the point where most medical professionals they spoke with were as in the dark about the condition as they were.
“Obviously we were hoping when he was getting tested that something curable or something minor would be the news that we got,” he said. “That way, we’d be able to help him.
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“When you get news like that, it’s heart-wrenching. There’s the initial grief there of trying to digest the fact that our son has a terminal disease, but then after the grief was… which path do we take now? It’s such a rare disease. Where do we go? Where do we turn?”
With limited options and time not on Leo’s side, the family learned about Miglustat, a drug that is typically used to treat other conditions, but had shown some promise with Niemann-Pick patients.
Krentz Dupont said that Leo’s doctor applied for Exceptional Drug Status through Manitoba health to get the medication, which is approved in Canada. That application, however, sat pending for a number of months, and with time running out, the couple made the decision to go public.
“We decided to speak out, to open up our son’s health condition with the public,” she said.
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“Our hope was that people would resonate with our story, that they’d see the tragedy, the devastation in it… and that they’d be able to identify with the heartbreak, the grief in it, and act on our behalf.”
That action, she said, involved emailing Manitoba’s health minister, Uzoma Asagwara, asking for the Exceptional Drug Status request to be expedited.
It’s a strategy that worked, with word spreading throughout the Steinbach community and beyond, and thousands of people emailing the minister on Leo’s behalf.
“It was overwhelming but in a positive way,” Dupont said.
“It was a lot to take in, but when we saw there were so many people taking action in Leo’s name, it was heartwarming, it gave us a little bit of hope in a hard journey.
“Obviously, it helped because within 24 hours, our minister of health contacted Kayla.”
The couple said they were taken aback by the unexpectedly quick response from the province, and even more shocked when, 24 hours after the initial call, Asagwara got back to them and said the request had been approved.
“We heard from thousands of Manitobans who rallied around Leo and the Dupont family, asking our government to take a closer look at this more quickly so that the family could get an answer on what the next steps would be,” they said.
Minister Asagwara said they have written to Health Canada asking the agency to engage with the manufacturer of Mypliffa, a drug not approved in Canada that is manufactured specifically Niemann-Pick disease type C.
After hearing the Dupont family’s story, an anonymous couple contacted them and offered to help them access the drug in the United States.
“We were hoping that somehow we can maybe get access to this drug in the United States, and this couple stepped up, and it sounds like will be able to try for it and see what they can do to help us out,” Dupont said.
“We want to thank the community, because this would not have happened without their support.”
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