MINNEAPOLIS — A 6-year-old boy is helping bring awareness to a disease that's so rare only about a dozen children are treated for it every year at M Health Fairview.
The Canadian-born boy is tested every year in Minnesota after surviving the rare, genetic condition called adrenoleukodystrophy, or ALD.
If left untreated, ALD is fatal, and it's because of this hospital — which performs more blood stem cell transplants than anywhere else in the world — that Conner Finn's life was saved.
"It's very clear to us who are taking care of these patients that we've made a lot of progress, but there's a lot we need to better understand," said Dr. Paul Orchard.
Orchard is a leading pediatric blood and marrow transplant physician, and part of the M Health Fairview team that treated Conner two years ago.
The genetic mutation, which can affect vision and coordination, among other brain functions, mostly strikes boys between 4 and 6 years old.
"A lot of these boys have had some difficulty in school, maybe they don't really understand the teacher, or complex directions," said Orchard. "Historically, patients didn't come to us unless they were symptomatic, but if it's gone that far, they have pretty extensive disease of the brain, and [are] on the cusp of not being able to treat them."
The only treatment for ALD is a blood stem cell transplant from a donor, which can cost upwards of $1 million. In the case of the Finn family, that set up a fight with the Canadian government.
Orchard says there's a narrow window when the condition can be treated, and it was only by chance doctors discovered the disease in Conner while the family was living in Canada. But at the time, services had also slowed drastically due to COVID-19.
The family also said there aren't any ALD specialists in the area.
"You have to really advocate, and you have to not take 'no' for an answer," said Kirsten Finn, Conner's mother. "I couldn't eat, I couldn't sleep, so I just read and read and read and we instantly felt that Minnesota was the very best place for him to be."
The Canadian government first denied their out-of-country coverage and forced the family to cash out their retirement account. But that didn't stop Kirsten from getting Conner the care he needed.
"We figured we're just going to get him to treatment first and we'll fight that battle later," said Kirsten.
Conner's transplant treatment would take several weeks. It started with chemotherapy, then the infusion, followed by months of check-ups that have all led up to a clean bill of health for the boy with a bright future ahead.
"I mean, that's the idea," said Orchard. "That's what we're here for."
In more good news, the family eventually won their financial fight and the Canadian government reimbursed them for Conner's care.
Now, they're giving back to other families and are fundraising for ALD research at the University of Minnesota. The U of M is hosting its third annual "X Out ALD" run on Saturday. You can find more information and how to participate or donate here.
Kirsten is also advocating to add ALD to the newborn screening test. It was added to the recommended panel in 2016, but it's only available in a handful of states, including Minnesota. It doesn't include Kansas, where the family now lives.
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