SASKATOON – Muhammad Akhter heard some devastating news three-and-a-half years ago. His three kids, Muhammad, Khadija and Sara were diagnosed with a rare genetic disease called Morquio Syndrome.
“Day by day … they are experiencing difficulty. In this syndrome, every part of the body is affected. It’s pretty hard for them to walk and run,” said the children’s father, Muhammad Akther.
The illness has resulted in severe vision loss and hearing loss for the kids. While there is no cure, the Akther family filed an application seven months ago for the province to fund a treatment that could help them live longer.
The therapy, called Vimizim, was approved by Health Canada more than a year ago. It could cost hundreds of thousands of dollars.
“It’s very hard to be patient. We have five kids and three of them have the syndrome. These kids … they have many questions,” said Akhter.
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The family’s case was picked up by The Isaac Foundation, an organization that works to provide support for kids suffering from rare diseases. Since then, the group has been working to speed up the process.
The family says they are hopeful that the province will help, especially because it is a progressive syndrome. Akhter says the reason he and his family moved to Saskatoon was for this treatment.
“We are anxiously waiting. Every morning we are just waiting for a positive response from the government’s side to get them started, so that they might be better.”
A decision is expected in the coming weeks.
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