A young girl from St. Albert is doing well one year after the government agreed to fund special treatment for the rare enzyme disorder she has.
Aleena Sadownyk suffers from Maroteaux-Lamy Syndrome, a rare enzyme deficiency which affects only nine children in Canada. The disorder causes cellular waste to build up in her joints and around her heart.
Alberta Health Services didn't cover the treatment of the disorder, which costs about $300,000 a year. Aleena now receives weekly injections, and she will have to for the rest of her life.
Today, Aleena’s parents say the four-year-old is doing very well.
“She has responded really well to the treatment,” Aleena’s mother Laura Sadownyk said. “She has been thriving. It has given her a new lease on life.”
Aleena’s father Dane Sadownyk said the biggest challenge so far has been monitoring her energy levels.
One day he asked Aleena how she was feeling, and after a few moment of silence, she told her father “I feel like I can dance now.”
Seeing the young girl doing so well has pleased the Isaac Foundation, the advocacy group that helped the Sadownyk family get the funding they needed.
“Treatments for rare diseases are so incredibly expensive,” said Andrew MacFayden of the Isaac Foundation.
“I hope that once families go through the very difficult diagnosis of the disease that they can be assured that the health care system is going to look after their kids.”