A Fairview family is thrilled with the approval from the Government of Alberta to receive the drug Zolgensma, the costly drug that is effective in helping treat the disease Spinal Muscular Atrophy, which carries a cost of 2.8 million dollars. 

The drug was recently approved by Health Canada at the end of last year, and in late January, Alberta’s Minister of Health, Tyler Shandro, announced that the drug will be funded by the province on a case-by-case basis. 

Max’s mom, Bryarly Parker said, ”We didn't really believe it. It took a few days to kind of sink in” Parker also mentioned they still have a long road ahead. 

"It’s not a cure, but it's incredible to see other children and what they've been able to do with this treatment. We've received that hope now an we can move forward and deal with the diagnosis itself and then look to our future” 

Since Max’s diagnoses in November, the family has been fundraising, advocating and spreading awareness. 

Before the approval of Zolgensma, the drug needed to be purchased privately.  So far, the family has raised over $1.1 million on a GoFundMe page. It also looks like the province will fully fund the treatment.  

“As of right now, we’re just going to leave it as is, until we know for sure until he is dosed and there's nothing left.  Then we'll kind of figure out what needs to be done with that” 

There is still no set date yet when Max gets his treatment. Parker mentioned that they still have to do an antibody test to see if Max’s body won't reject it, and gain weight.  

The test has to go to the Netherlands to be tested, which will take a week to get the results back. Parker mentioned that the test is only valid for two weeks, so they are hoping it will be done in March in Edmonton.