North Dakota family gets new outlook on life after battling with a rare genetic disease

FARGO — Tuesday, July 11, was check up day for the Nadeau family from Dunseith, North Dakota, at a Sanford Health clinic in Fargo.

“When my son was 5 years old he had his first stroke. That’s when we initially learned he had moyamoya,” said Brittany Nadeau, a mother of three.

Moyamoya is a rare genetic disease that blocks arteries in the base of the brain causing serious complications. One of the oldest of the family, Ben Nadeau, was the first in the family to feel the impact.

“We didn’t find out his twin sister had moyamoya until he had his second stroke when he was 7 years old. After that it has been a roller coaster of emotions,” she said.

It turned out to be a potentially lifesaving discovery. It did not take long for the Nadeau family to learn all three of their kids, Ben, Roz, and Natalee all have the dangerous disease that is mainly found in Asia.

“Soon after I found out two of my children had it, I found out a third child had it. I was like, ‘What are the odds of this?’” she said.

“We know in certain ethnic groups in South America and certain groups in Africa this happens, but to have something like this here in North Dakota is unheard of,” said Dr. Alexander Drofa, a Sanford Health vascular neurosurgeon. “The odds of this are probably less then winning the powerball,” Drofa said.

The odds of finding the right treatment are not favorable either, with very few institutions in the country providing care for moyamoya.

“Some people have hit the lottery of luck and I kind of went the opposite way,” Brittany Nadeau said. “But in a way I did hit the lottery because I do have a doctor that is so skilled just four hours away.”

“It’s important for the family to have this ability to have this option to get this care close to home, so they don’t have to fly to Chicago or somewhere on the west and east coast to get this same surgery,” Drofa said.

Three strokes for Ben Nadeau and close to 10 combined surgeries between the kids has meant removing veins from other parts of their body to bypass the the bad veins in their head. It has led to countless miles in the car and check ups at Sanford. Six years since the first diagnosis, the Nadeau family is in good health with a new outlook on life.

“Life is going to give you troubles. Don’t let it beat you down. Take every day day-by-day and keep moving forward,” Brittany Nadeau said.