By Slav Kornik Global News
Edmonton – Three-year-old Aleena Sadownyk was recently diagnosed with a rare disease called Matoeaux-Lamy Syndrome, also know as ‘MPS’.Aleena lacks the enzyme needed to break down waste in her body, so it builds up on organs, bones, and muscles.
The disease will cut her life short if she doesn’t get treatment.
The drug Aleena needs isn’t approved in Canada, so her family is hoping the province will fund the costly treatment.
“It’s something that she deserves. As any other child should have, we want her to have as full a life as possible and every opportunity she should have,” says Aleena’s dad, Dane Sadownyk.
“Her heart valve is affected, her liver and spleen are enlarged and of course the deposits on the bones. It will result eventually in death,” says Aleena’s mom Laura Sadownyk.
Aleena’s parents have applied for help. The treatment costs $300,000 a year for a person Aleena’s age.
Patients in Ontario, Saskatchewan, BC and Quebec have secured provincial funding for the drug and they say it’s changed their lives.
Andrew Mcfayden’s son is one of the patients who received the drug in Ontario.
Mcfayden is now trying to do the same for the Sadownyks.
“It’s nerve-racking, it’s frustrating…if you think about it the fate of their daughter rests in the hands of a few bureaucrats at Alberta Health and I wouldn’t wish that on anybody,” says Mcfayden.
Wildrose Health Critic heather Forsyth has written a letter to the minister asking him to fund Aleena’s treatment.
“Every day this child waits her condition deteriorates. We need to help her,” says Forsyth.
Health Minister Fred Horne has sent a statement to Global News:
“My heart goes out to the Sadownyk family. I know they want to do everything they can to help their daughter. The family has contacted my office recently and were immediately put in touch with appropriate officials who could assist in supporting the family in making a funding request through appropriate programs.
As things stand, Naglazyme has not yet received general market approval through Health Canada. Because it doesn’t have federal approval, the options for funding this drug are different than for some other drugs. Albertans who need access to high-cost drug therapies not already covered by provincial programs may explore funding options through the Short-term Exceptional Drug Therapy Program. That program relies on medical experts to assess whether a specific drug will be safe and effective for a specific patient. It’s done on a case-by-case basis, so it can take a patient’s needs and particular health condition into account.
“As a politician, I don’t get directly involved in assessing which drugs would be funded through that process – and appropriately leave that assessment to medical experts. Department officials will continue to support the application process, a clinical review is underway now and I understand we expect a response soon.”
But soon can’t come soon enough for the Sadownyks.
“She’s a little girl. She didn’t ask for this. She didn’t deserve it. She should be given every opportunity like any child to have the best shot at life,” says Aleena’s dad.
With files from Vassy Kapelos
© Shaw Media, 2013