EDMONTON – A St. Albert family who fought to have their daughter’s medical expenses covered visited the Alberta Legislature Thursday to say thank you.
Three-year-old Aleena Sadownyk has a rare disease called Maroteaux-Lamy Syndrome (MPS VI). It makes her unable to break down waste in her body, causing it to build up on her organs, bones, and muscles.
There is no cure for MPS VI, and the drug used to treat the disease, Naglazyme, was not approved in Canada. That was, until the Sadownyk family appealed to the provincial government for help.
Following the Sadownyk’s request in early August, the provincial government agreed to fund Aleena’s treatment. Days after that announcement, Health Canada approved the drug nation-wide.
Wildrose MLA Heather Forsyth introduced the entire Sadownyk family during Question Period Thursday.
“Mr. Speaker, this family has literally stolen the hearts of mine, the caucus and for that matter, all Albertans.”
Watch: Sadownyk family introduced during Question Period
Aleena’s father says his daughter has received about 10 treatments since then and things are going wonderfully.
“Every time we see her after treatment we just notice remarkable results. So, pleasantly surprised and excited for her future,” Dane Sadownyk said with a smile.
He says his entire family is extremely grateful to everyone who helped his family through the tough time.
“Thank you to the people that were working with the Isaac Foundation to make this realization be possible for our daughter,” he said. “We cannot be thankful enough to see Aleena today in the state she’s in.”
Without coverage, Aleena’s treatment would have cost about $300,000 a year.
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