'It's a new life': Father grateful for drug funding for 3 Saskatoon siblings

The province has reversed its decision and decided to pay for the expensive drug treatment of three Saskatoon siblings who suffer the same crippling disease.

• Province says no to medicine for three children, but will review decision

Muhammad Abdullah, 12, Khadija Amir, 10 and Sara Amir, 8 all have a rare enzyme deficiency called Morquio A Syndrome.

Without the missing enzyme, cellular waste builds up in the bones, tissues, organs and muscles.

The condition is stunting the children's growth, twisting their joints, affecting their eyesight and hearing, and making it tough for them to breathe. Two of them use wheelchairs at school.

In a release today, the province said it will cover the cost of Vimizim for one year and allow some time to assess the drug's effectiveness. Any further decision to pay for Vimizim for Saskatchewan residents will still be made on a case-by-case basis.

The children's father Muhammad Amir Akhter said he received a phone call while picking up his children from school. 

"It's a new life, not only for the kids, for the entire family. I am speechless, I am speechless I can't speak my words to say thanks to the ministry of health, honourable minister Dustin Duncan," Akhter said. 

Health Minister Dustin Duncan said the ministry had three health experts — from both inside and outside the country — provide an opinion. 

Duncan said the recommendations came back to say that "there may be a benefit for these three children."

CBC asked the minister if there is a problem in the process if the family had to make their concerns public, after it had first tried going through the formal, reportedly nonpoliticized process. 

Duncan said he was comfortable with the process and with the fact that he asked for a second opinion.

"There's so much just differing opinions in terms of the efficacy, whether it's different drugs or enzymes or whatever type of treatment. In a lot of cases, treatments are changing perhaps more quickly than drug plans and provinces can keep up with them," he said.

He said the common drug review process is the right process, but the information that went through the review was limited when it came to efficacy of this drug.

Duncan also noted the treatment is not a cure, but a drug that can potentially stop the progression of the disease. 

"This family still has a very challenging road ahead of them."