A three-year-old St. Albert girl who was able to get the province to fund her expensive medication is doing much better.
Aleena Sadownyk suffers from Maroteaux-Lamy Syndrome, a rare enzyme deficiency which affects only nine children in Canada.
She has received ten treatments since the province agreed to fund Naglazyme, the drug used to treat the disorder, in August.
On Thursday, Aleena and her family came to the Alberta legislature for an update with Wildrose health critic Heather Forsyth.
“It's wonderful we're happy with her progress,” Aleena's father Dale Sadowynk said. “Every time we see her after her treatments, we just notice remarkable results.”
Naglazyme, a drug that costs between $300,000 and $1 million each year, is not covered by Medicare.
The family’s first request for help was turned down because the drug didn’t have general market approval through Health Canada.
However, funding under the Alberta’s Short Term Exceptional Drug Therapy Program was approved.