Moyamoya and childhood stroke: Catching up with Tyler and Ryan

pediatric-strokeRyan (above left) and Tyler Earle of Winnipeg, Canada had a ticking time bomb inside their heads. Both boys have a rare brain disorder called moyamoya that had caused the arteries feeding their brains to become dangerously narrowed.

At first, they experienced only headaches. But then Ryan suddenly lost his ability to write, began having trouble with word-finding and became weak on one side of his body — signs he had suffered a stroke. He was diagnosed with moyamoya and had partial surgery, but a second stroke took away part of his vision and partially paralyzed him.

Ryan needed a second operation as soon as possible. By this time, Tyler was diagnosed with advancing moyamoya disease and would need neurosurgery too, on both sides of his brain.

The family’s research led them to neurosurgeon Dr. Edward Smith of Boston Children’s Hospital. Smith felt he could operate on both sides of Tyler’s brain on the same day, rather than space out the operations, and could complete Ryan’s surgery rather than wait as the hospital in Canada had cautioned.

The boys’ back-to-back moyamoya operations took place in May 2013. One year later, brain angiograms showed healthy vessels and blood flow.

Now it’s two years out and both boys are busy and happy. Tyler plays soccer and basketball and has won two provincial chess championships since his surgery. He is in a fourth-grade French immersion program and attends a weekly after-school math program. He does have migraines a few times a season.

Ryan’s headaches have disappeared and he’s making steady gains. His two strokes have left him with an intellectual disability — he is in a modified school program, but he’s out of a wheelchair and his motor skills have improved tremendously. Like Tyler, he plays soccer and he also participates in a weekly triathalon club.

Ryan and Tyler celebrate their 10th birthday
Ryan and Tyler celebrate their 10th birthday

“Ryan faces many challenges academically,” says his mother. “Sometimes when I foolishly mourn what could have been, I remind myself that he is a happy, healthy, loving boy. We are so lucky to have him with us after all he has been through.”

Learn about care at the Boston Children’s Cerebrovascular Surgery and Interventions Center.