“When my son was 5 years old, he had his first stroke.”
Brittany Nadeau speaks now about her son’s health like a parent who has been to quite a few hospital visits.
“We didn’t find out his twin sister had moyamoya until he had his second stroke when he was 7 years old,” Nadeau said.
Nadeau is a mother of three children — Ben, Roz and Natalee — all of whom have been diagnosed with a rare disease called moyamoya.
“Basically this is a disease that happens when you have problems with the blood flow to your brain,” said Alexander Drofa, M.D., the director of cerebrovascular neurosurgery at Sanford Health in Fargo. “The vessels that feed your brain … for some reason they develop progressive narrowing with time. And if this narrowing progresses, in lots of people you can develop stroke.”
Dealing with the disease
Moyamoya disease effects only about 1 in every 1.2 million people, and typically doesn’t show any symptoms until a stroke happens.
“It’s such a rare disease that there’s not a lot of studies done so far. I feel like my kids are kind of paving the way for the other children that are getting it,” said Nadeau.
Ben has been paving the way for his sisters too. When he was diagnosed with moyamoya, tests were done on Roz and Natalee.
“By having a stroke, he basically saved two of his siblings from having a stroke,” said Dr. Drofa.
Michael Manchak, M.D., is a neurologist at Sanford Fargo. He says despite the overall rarity of moyamoya disease, it’s not out of the ordinary for other family members to have it.
“Once you identify somebody that has it in a family, there are a few genes that have been associated with this condition,” said Dr. Manchak. “So you do wonder, ‘OK, well if the genetic component is in play, what should we do about the folks that are related to these people who we know have this condition?’”
For the Nadeau family, preventive surgery was the solution. A new vessel would be put in to bypass the flow of blood around the narrowing vessels.
“Sometimes we can take a vessel from your forearm and connect it to the neck and then connect it to the vessel in the brain,” Dr. Drofa said.
Ben has had five surgeries. His twin sister, Roz, has had two. And little Natalee has had three. Neither girl has suffered a stroke, and all three are doing well post-operatively.
“They’re pretty healthy,” said Nadeau. “Roz does basketball. Ben likes to do different STEM camps. Natalee, she likes to do other things with her friends. They dance in powwows, you know, everything that kids do.”
Hitting the lottery
Every six months the Nadeau family drives to Fargo from tiny Dunseith, North Dakota, to get MRIs and see Dr. Drofa, who has become a fast friend to the family.
“People say, you know, some people have hit the lottery of luck, but I kind of went the opposite way,” said Nadeau. “In a way I did hit the lottery, because I do have a doctor that is so skilled that lives only four hours away.”
Dr. Drofa’s expertise has benefited all three Nadeau children. It’s a responsibility he doesn’t take lightly, especially as he’s helped ease the burden of a fellow parent.
“I’m a father myself, so I can’t even imagine how stressful it is for the mom to see her child having a stroke,” said Dr. Drofa. “But at the same time, we’re professionals. We have to take feelings away and just focus on the technical problem to help those kids.”
After 10 surgeries combined, the Nadeau children are hoping their problems with moyamoya disease are behind them. Thanks in large part to Dr. Alexander Drofa and Sanford Health.
Learn more
- Netflix ‘Diagnosis’ family searches for rare disease clues
- Rare, but not alone: CoRDS connects rare disease patients
- Lilah Newton, 10-year-old stroke survivor
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Posted In Brain & Spine, Fargo, Neurology
