Sask. reimburses family who went to U.S. for son's medical procedure

An emotional Kirsten Finn says her family can look forward to a brighter future after the province agreed to reimburse the Finns for their son's out-of-country medical expenses.

"I'm in shock. I didn't expect it to happen so quickly, but we're very grateful for it to be resolved because it allows our family to move on," said Finn of the province's decision.

Kirsten's five-year-old son Conner has adrenoleukodystrophy — a rare neurological disease that required a bone marrow transplant in order to save his life — but even though his family lived in Saskatchewan, he needed to go to Minnesota for treatment.  

Adrenoleukodystrophy requires aggressive treatment within a specific window.

The Finns drained their life savings — more than $800,000 — to get the treatment.

The province initially said wouldn't fund his treatments.

But the opposition NDP brought Kirsten and Conner to the legislature last week where they met with Health Minister Paul Merriman.

Merriman said he would review the file and today announced the province would reimburse the family.

"There was some other information that the Finn family had brought to me last week that I needed to verify and digest, and I did that certainly over the weekend and reviewed it and came to the decision," Merriman said.

"I looked at this as the minister of health, but I also tried to look at it from the lens of a parent as well, going through a very challenging time with a very small child. So that came into my decision as well to make sure that I was looking at it from all perspectives as I should."

Finn says Connor is doing well after his treatment and has been cleared to enrol in kindergarten. 

She said the reimbursement will help finance future care for Connor and his brother, who also has health issues.

"Connor will require a number of different types of therapies, and it just means that we can go forward and have a little bit of security and know that we can provide those therapies for both of our sons so that they can go forward and and lead successful lives," Finn said.

Merriman said the Ministry of Health is going to create a rare disease strategy that will look at how Saskatchewan can best take care of individuals in similar circumstances.

"I think it opens the opportunity to be able to discuss this with my provincial and territorial counterparts and maybe the new [Canadian Health Minister Jean-Yves Duclos] to see if there's some collaboration and Saskatchewan can lead that charge on the rare disease side of things and make it a national program."

Kirsten Finn said she wants to help out with formulating a rare disease strategy for the province.

"It has been an area where some kids can really fall through the cracks," she said.

"It's very important to us going forward to continue advocacy for rare disease families in Saskatchewan and in Canada as well. So we're very grateful for that and look forward to hopefully paying it forward and working with some other families."

She's also thankful to the NDP for bringing up her case back in the spring and continuing to advocate on their behalf.

Andrew McFadyen, who advocated for the Finns, said the decision shows what can be accomplished when everyone works together.

Opposition Leader Ryan Meilli "raised this all week in question period ... and kudos to them for understanding that there's a human side to these decisions," said McFadyen.

"And at the same time to the minister and his office committing to this review and then following through in such a way that they could also objectively see that Connor deserves to have his treatment covered."