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<\/p>\nThe 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.<\/p>\n
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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 \u2014 and ultimately fatal \u2014 progressive neurological illness.<\/p>\n
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\u2019t given any conclusive diagnosis, only speculation as to what might be happening with their son.<\/p>\n
\u201cWe 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,\u201d she said.<\/p>\n
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\u201cIt was at four years old that we started to notice some changes in Leo\u2019s movements. That\u2019s when we started to see some tremors. We also started to notice changes in his gait pattern, in his walking.<\/p>\n
\u201cAll of this was signs of the Niemman-Pick type C disease that Leo was diagnosed with at the end of June 2025.\u201d<\/p>\n
Mario Dupont said after receiving the diagnosis, the family learned just how rare the disease is \u2014 to the point where most medical professionals they spoke with were as in the dark about the condition as they were.<\/p>\n
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\u201cObviously we were hoping when he was getting tested that something curable or something minor would be the news that we got,\u201d he said. \u201cThat way, we\u2019d be able to help him.<\/p>\n
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\u201cWhen you get news like that, it\u2019s heart-wrenching. There\u2019s the initial grief there of trying to digest the fact that our son has a terminal disease, but then after the grief was\u2026 which path do we take now? It\u2019s such a rare disease. Where do we go? Where do we turn?\u201d<\/p>\n
With limited options and time not on Leo\u2019s 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.<\/p>\n
Krentz Dupont said that Leo\u2019s 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.<\/p>\n
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\u201cWe decided to speak out, to open up our son\u2019s health condition with the public,\u201d she said.<\/p>\n
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