The provincial health critic is standing beside a family in Saskatoon desperate to re-coop $800,000 they spent to save their little boy’s life.
Five-year-old Conner Finn was diagnosed last June with a rare disease, cerebral adrenoleukodystrophy (ALD).
“This is a disease that will rob your child of their sight and hearing,” said Kirsten Finn, Conner’s mother, during a virtual press conference held by the NDP Friday.
“They will not be able to eat, to walk, to communicate and the end result is a very slow and painful death.”
The family travelled to Minnesota for treatment, something they said they feel was their best option, even though they had yet to be approved for medical coverage.
“Because he was able to be treated where he was our son still has maximum neurologic function and will be able to lead a relatively normal life,” Finn said.
Today, Conner has adrenal insufficiency, meaning his body cannot produce cortisol to fight off illness if he gets sick or injured; he also has a demyelination on his brain. He’ll need to take steroids the rest of his life for the adrenal insufficiency, Finn said.
The family said the province gave the option of getting the transplant in Winnipeg or Toronto, but there was no clear timeline or an ALD specialist to treat Conner.
Conner only had a short window of time before the disease would make him ineligible for the transplant he needed.
Andrew McFadyen is executive director of the Isaac Foundation, an Ontario-based foundation focused on advocating for families coping with rare diseases.
He said most of the world’s ALD specialists are in Minnesota.
“This child would have been sent to Toronto, and then that consult would have taken place to Minnesota and he probably would have been sent to Minnesota from there anyway,” he said.
“By that time we would have run out of time for Conner.”
NDP health critic Vicki Mowat is joining the family in calling on Premier Scott Moe to reverse his government’s previous decision and provide compensation for Conner’s out-of-country care.
“The Ministry of Health covers the physician/hospital costs for out-of-country treatment only in exceptional circumstances and under certain conditions,” wrote ministry spokesperson Jennifer Graham in an email to Global News.
Graham said a “key requirement” is the services are both medically necessary and not obtainable in Canada.
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