Local News
Steinbach boy approved for medication to slow terminal illness
A family from Steinbach has received the news they have been praying for. Kayla Krentz Dupont says Health Minister Uzoma Asagwara called her earlier today to let her know that their son Leo has been approved for Miglustat. Five-year-old Leo Dupont is the youngest of three children of Mario and Kayla. Earlier this year, he was diagnosed with Niemann-Pick type C or NPC. Krentz Dupont says this is a very rare, terminal neurological disease that is slowly causing their little boy to lose his ability to walk, talk, and think. "This is different than it was when we woke up this morning." Earlier this week, Krentz Dupont expressed frustration that her son has yet to be granted any medications that could delay the progression of this disease. She notes that one of the drugs that he could benefit from is Miglustat, which the family is seeking through Manitoba Health and the Exception Drug Status (EDS) program. According to Krentz Dupont, their application for Miglustat had been sitting as 'pending' since August 21. She also reached out to Manitoba Health Minister Asagwara for help, but as of Monday had yet to hear back. That all changed on Tuesday. Krentz Dupont says the Health Minister called her and it was an extremely positive conversation. Asagwara informed her that Leo's application would be expedited. Then on Wednesday morning, the Health Minister called her again. This time, it was to let the Dupont family know that Leo has been approved by EDS to receive Miglustat. "We are thrilled by this news, and we're so appreciative," says Krentz Dupont. "This changes things for us. This is different than it was when we woke up this morning." Asagwara acknowledges that when a child's health is at stake, no timeline feels quick enough. "That is why I directed officials to move as quickly as possible, while maintaining the integrity of the review process, which is so important," explains Asagwara. "I recognize, and we as a government recognize that Manitobans deserve both compassion and confidence in the decision that we make." Krentz Dupont says they were told that a team from the Health department will be working with Leo's doctor, and that there will also be a team from the department working with the family to sort out the Pharmacare details. Krentz Dupont says today's announcement means that her family will be able to utilize Pharmacare to fund the medication. And, though no timeline was given, Krentz Dupont says she expects that within the next week or two, Leo will receive the medication. Krentz Dupont says they have now accomplished the first step. The next task is to gain access to the federal drug called Miplyffa. "We will continue to look into what our options are in that regard," she says. "Minister Asagwara is also contacting the federal health minister, bringing attention to Leo's need for Miplyffa." Krentz Dupont says a big thank you to the community for all the emails that were sent to the Health Minister on Leo's behalf. "Thank you for the emails, thank you for the prayer, thank you for the support, thank you for showing up for our son," she says. Meanwhile, Asagwara commends the Dupont family for their willingness to share their story and for reaching out to the government for help. "Any family going through what they are going through can be understandably overwhelmed by the reality that they are facing," says Asagwara. "And we want to make sure that we just make this journey a little bit lighter where we can in terms of the process." Asagwara says Leo sounds like an amazing and very brave little boy who is surrounded by love. "He has an incredible support system, wonderful parents, wonderful family, and community," says the health minister. "It's been really heartwarming to see so many Manitobans reach out on behalf of Leo and his family." Asagwara says thousands of Manitobans contacted the health minister's office.