A family from Steinbach is begging for help as they watch their child's health slowly deteriorate from a terminal illness. Kayla Krentz Dupont says four months ago, her son Leo was diagnosed with Niemann-Pick type C or NPC. Krentz Dupont says this is a very rare, terminal neurological disease that is slowly causing Leo to lose his ability to walk, talk, and think. Five-year-old Leo is the youngest of three children of Mario and Kayla. "He's just the best little boy," says his mother. "He has such a great sense of humour." An avid sports fan, Krentz Dupont says her son loves watching the Toronto Blue Jays, Winnipeg Jets, and Winnipeg Blue Bombers. He will re-enact the 'George Springer Dinger' homerun of the Jays or pretend to save goals like Connor Hellebuyck or score like his favourite Jets players, Mark Scheifele and Jonathan Toews. Krentz Dupont says though they continue to see his personality and disposition shine through the disease, they are also well aware that every day they lose a little more of their boy. Krentz Dupont says since learning of their son's diagnosis in late June, they have had to rewrite what normal looks like for their family. They continue to digest the news but have also been forced to learn about our health care system and what it means to navigate around a rare disease. She notes NPC is exceptionally rare, and there is no organization within Manitoba, specializing in care, that they can turn to. "Rare diseases often involve a family member taking it upon themselves to advocate for the care, and that's what this has created," shares Krentz Dupont. "Finding care for Leo has now become my fulltime job." However, the calendar has turned to November, and the frustrated mother says her son has yet to be granted any medications that could delay the progression of this disease. "And without these medications, he's being robbed of his opportunity to make the last couple years of his life reach the highest quality that a person with Niemann-Pick type C can strive for," she says. Krentz Dupont explains that there are two different medications that her family is currently awaiting approval for. One of these, at the provincial level, goes by the name of Miglustat and is already an approved drug within Canada. The other medication goes by the name of Miplyffa, and involves a federal application because it is a drug that is not available within Canada or approved by Health Canada. She notes their specialist has submitted applications for both medications. Krentz Dupont says their specialist put in an application for Miglustat with the Exception Drug Status (EDS) back on August 6th. According to our provincial government, certain drugs or other items are approved for coverage under the EDS Program when they meet specific criteria and upon review and recommendation of the Manitoba Drug Standards and Therapeutics Committee (MDSTC). According to Krentz Dupont, EDS responded on August 18th, requesting additional information, but since August 21st, it has been sitting as a pending application. She explains that contacting EDS is not something that she can do, but rather this must be done by Leo's doctor. Therefore, her form of advocacy is to seek answers from government as to why there has been no movement on their file. Krentz Dupont says while Steinbach MLA Kelvin Goertzen has been helpful, the same cannot be said for Manitoba Health Minister Uzoma Asagwara. Though Krentz Dupont says she has made numerous attempts to contact the Health Minister's office, she has only received a response from Robert Shaffer, the Assistant Deputy Minister for the insurance division department of Health in Manitoba. However, she says Shaffer's response was about accessing the federal drug, Miplyffa, while Krentz Dupont had clarified with Minister Asagwara, as per her email on October 16, that she is now seeking assistance with her provincial application for Miglustat, not Miplyffa. Krentz Dupont says there is evidence that Miglustat could improve Leo's movements. She notes they were recently watching home videos from May of 2024, showing Leo running. "In the last year and a half, he's lost his ability to run," she says sadly. "The hope is that with medication, that some of these movement tasks can be made easier for him for the time being." Krentz Dupont says they are well aware that Leo has a progressive disease. However, their goal is to give him the best quality of life for the remaining time they have with him. "Just the potential to see him run again or feed himself without tremors, or be able to put his winter boots on," she says. "All of those things are things that we hope this medication will be able to allow him to do again for the time being." Krentz Dupont is urging government to help her family get this medication for Leo. "I need Leo's application for Miglustat to be looked at, to be acted upon, and I need it to be approved because he needs medication that can help him," she says. "And the fact that he has this disease and we have potential medications that could help him, and we're not getting access to them, is another level of heartbreak in this very heartbreaking journey." As mentioned, there is also a federal drug called Miplyffa, that could help Leo. Krentz Dupont says it works synergistically with Miglustat. She explains that Miglustat would be step one and Miplyffa would be step two. Miplyffa involves a federal application with Health Canada through the Special Access Program (SAP). Krentz Dupont says they have received word that, unfortunately, they do not have access to this medication through SAP, and so right now that application is at a standstill. Krentz Dupont states, however, that Miplyffa is not a drug that has been brought to Canada, hence why they need approval from Health Canada. She notes this process can often take years, but in their case, Leo does not have years to wait for the drug to be approved. Krentz Dupont says they are considering their options for getting this drug for Leo, but barriers include how to get this drug across the border, finding a physician who will work with them, and then of course paying for this very costly endeavour. "As of right now, we kind of focus on step one of our medication journey in terms of first gaining access to Miglustat here at the provincial level and then step two being continuing this journey for Miplyffa with the United States," she says. For now, Krentz Dupont says they are literally begging the public to help them. "We're begging for people to take action," she says. "At this point, action would mean contacting our provincial Minister of Health." She is asking people to send an email or phone the Health Minister, on behalf of Leo, to get their provincial application reviewed and approved. "To help our dying five-year-old," says Krentz Dupont. "To give him a chance for the last years of his life to be of highest quality." Krentz Dupont is asking the public to contact the Health Minister at minhsltc@manitoba.ca and cc. kaylakrentz@gmail.com when submitting the following email: Subject: Miglustat for Leo Dupont Dear Honourable Uzoma Asagwara, I am contacting you on behalf of Leo Dupont, a 5-year-old boy who is dying of a rare and terminal neurological disease, Niemann-Pick disease Type C (NPC). His doctor applied for the medication of Miglustat with Manitoba Health, Exceptional Drug Status (EDS) on August 6, 2025. Miglustat is already an approved drug in Canada. Leo's application for Miglustat is still marked as 'pending.' Your action on this matter is of the utmost urgency. Leo requires access to Miglustat with the hope that it will slow the progression of NPC and the neurological effects on his body. Every day, he continues to lose control of his body, affecting his ability to walk, talk, and think. He is reaching the 5-month mark since his devastating diagnosis and is still without any medication. This needs to change. Leo needs the opportunity to live out the remaining years of his life with the greatest level of life quality that can be awarded to a patient of NPC. Without medication, he is being robbed of his opportunity. I request attention be drawn to his application for Miglustat with Manitoba Health, Exceptional Drug Status. I request that he be granted access to Miglustat. I thank you in advance for your attention to this urgent matter. Sincerely, [Insert Your Name]