SASKATOON – A Saskatoon family is breathing a sigh of relief. The Akhter family has had a rough couple months as they waited on the Government of Saskatchewan to fund a potentially life-saving treatment for their kids.
But now, the wait is over. On Tuesday, the province announced it would fund a therapy to help treat Muhammad, Sara and Khadija.
All three siblings suffer from Morquio syndrome, a rare genetic disease. The illness has resulted in severe vision and hearing loss for the kids and it’s impacted their joints too.
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Initially the province denied funding, stating the efficacy of the drug was questionable for their age.
While the Ministry of Health has agreed to try it out for a year, Muhammad Akhter says it’s enough to give the children a fighting chance.
“We feel like we’re reborn. And we are looking at a sun shining day. So it’s a new hope, new life not only for the kids but the parents as well,” said their father, Muhammad Akhter.
“There may be a benefit for these children. But it makes a lot of sense to make it not an open-ended commitment to them … there needs to be some clear measurable goals that will be put in place,” said Saskatchewan Minister of Health Dustin Duncan.
After a year, the province will evaluate the children’s progress and come to another decision about their treatment.
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