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Saskatoon siblings with rare genetic disease to receive treatment

The province will pay for the treatment of three Saskatoon siblings with a rare genetic disease. Leena Latafat / Global News

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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READ MORE: Medical treatment funding plea for children with rare genetic disease

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.

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“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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