The provincial NDP is advocating for a mother and father who had to liquidate their retirement savings to pay for treatments in Minnesota for their four year old son. Conner Finn has since turned five and is doing well, but his mother Kirsten says the treatment for ALD is not a cure. Kirsten and Craig Finn paid over $800,000 for their son’s treatment.

The Finns say the Health Ministry refused funding because the treatment should have happened in Canada, but Kirsten says the only option would have been Toronto, and even then they would have been referred in the end to Minnesota, but they couldn’t wait because the disease takes over too quickly. The Saskatchewan Health Authority recommended the Minnesota option.

The Finns were told there would be an up to 8 week wait for an MRI in Canada because Conner wasn’t showing any outward symptoms, but Kirsten explains that by the time ALD has outward symptoms, it’s too late. Health Critic Vicki Mowat says the family appealed the decision with the Health Services Review Committee, which sided with the family, but the government continues to argue the treatment could have happened in Canada. The Finns have filed a complaint with the Saskatchewan Human Rights Commission and the Provincial Ombudsman.

Kirsten questions the government’s decision saying not getting the treatment would have meant expensive palliative care for the rest of Conner’s life, which would have been cheaper than treatment. Kirsten says even if they don’t get the money back and are in debt for the rest of their lives, they made the right decision, and it wasn’t a difficult decision to make.

The Boston Children’s Hospital website says as ALD progresses, some of the symptoms include vision problems, seizures, deafness, the inability to speak or respond and without treatment, it can lead to a vegetative state or death within a few years.