Stories about: moyamoya

Fighting for Kennedy: Coping with moyamoya disease

Girl with moyamoya disease is thriving.

If you happen to be waiting in line at the supermarket with Kennedy Grace Cheshire, you’ll likely leave the store with a whole new group of friends. This outgoing five-year-old can’t resist introducing herself to her fellow shoppers — and then introducing them to each other. “She’s never met a stranger,” says her mother, Amber.

Kennedy, who lives in Texas, brought that playful attitude to the East Coast last year when she and her family arrived at Boston Children’s Hospital for evaluation and treatment.

At age two, she had been diagnosed with neurofibromatosis 1 (NF1), a genetic condition that causes symptoms including benign tumors that form from nerve tissue. The diagnosis wasn’t surprising: Kennedy’s father Robert has NF1, too. But a couple of years later, an MRI scan brought a shock.

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After Moyamoya surgery, a back-to-normal birthday for Carolyn

moyamoya-surgery
Before Moyamoya surgery

Carolyn Milks turns 8 on August 21. It’s a big celebration. Carolyn and her family aren’t just celebrating her birthday — they’re celebrating Carolyn’s return to normal. For most of the summer, things like swimming, riding her bicycle and horsing around with her sisters and cousins had been out of the question for Carolyn.

But on August 11, Dr. Ed Smith, co-director of the Boston Children’s Hospital Cerebrovascular Surgery and Interventions Center, gave Carolyn the green light. She could go back to being a kid.

“This is what kids really want. They just want to be normal and do their normal activities,” says Carolyn’s mother Kristen.

It had been a topsy-turvy spring for the Milks family.

My heart and mind froze. Her whole left side was weak. … Only one part of the body controls both the arm and the leg. I thought, ‘Carolyn has something wrong with her brain.’

Carolyn, normally a bright, active second grader, started having puzzling symptoms in March.

“She was having a hard time concentrating on her homework and was crying, and my husband and I couldn’t figure out why,” recalls Kristen.

Over the next few days Kristen, an occupational therapist, began observing strange movements in her daughter’s left arm and hand. Carolyn appeared to struggle with everyday activities like holding a pencil, tying her shoes, and she even tried to switch her hand dominance. Kristen set up her phone to video Carolyn.

At the end of the week, while Carolyn, her twin sister Laura and their big sister Emma, were playing at a trampoline park, Kristen watched the videos.

“I was becoming alarmed at what I saw with the functioning in her left arm and hand. Later that day, I watched Carolyn almost fall doing a back bend. Her left arm didn’t hold her weight. And then when I watched her walk, she almost fell a couple of times; she didn’t have full control of her left leg. My heart and mind froze. Her whole left side was weak. … Only one part of the body controls both the arm and the leg. I thought, ‘Carolyn has something wrong with her brain.’”

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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.

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From Bermuda to Boston for surgery to protect the brain of a boy with sickle cell disease

Calvin_Steede_kneeling_in_suitCalvin Steede, who lives in Bermuda, will never forget the day in 2011 when he saw the movie “Winnie the Pooh” with his mother and sister. The film ended, and suddenly the boy who likes to draw and play soccer couldn’t put on his backpack. His arms had stopped working. He couldn’t stand, and soon he couldn’t talk.

Calvin, now 11, had suffered a minor stroke, a complication of sickle cell disease and the first step of a journey that would take him to Dana-Farber/Boston Children’s Cancer and Blood Disorders Center for minimally invasive surgery to protect his brain from future strokes.

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