Stories about: Dr. Edward Smith

4 questions parents have about moyamoya disease

moyamoya disease questions and answers

Last month, families from across the country gathered at Boston Children’s Hospital to celebrate World Moyamoya Day. The expert speakers at the Moyamoya Family Day Symposium shared the latest information about this rare but very serious condition with parents and patients alike.

Moyamoya disease occurs when the walls of the internal carotid arteries — the vessels that supply blood to important areas of the brain — become thickened and narrowed. As a result, blood flow to the brain slows, making blood clots more likely. Kids with moyamoya disease are at significantly higher risk of having a stroke, as well as other complications such as seizures and cognitive problems.

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Keeping up with Amanda: Life after brain surgery

Amanda LePage is now a happy 9-year-old.In most ways, Amanda LePage is just like any other rambunctious fourth grader. She loves school, dance class, playing basketball and keeping up with her twin sister Macy and older brother Nathan. Sometimes it just takes her a little longer to do these everyday things. That’s because Amanda has been through a lot in her short nine years.

Amanda was just 5 months old when she was brought by helicopter to Boston Children’s Hospital for a hemorrhage in her brain from an intracranial aneurysm, a type of vascular malformation. Despite long odds, Amanda survived two life-saving brain surgeries and a massive stroke that left her with cognitive delays, no use of her left arm or hand, and weakness in her left leg.

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Superhero Joey: Five-year-old fights moyamoya disease

fighting moyamoya disease

It’s been said that not all heroes wear capes — but Joey Gallagher owns several. The five-year-old has already amassed a collection of superhero gear, from a Superman Halloween costume to a t-shirt emblazoned with the Batman logo. Yet even the most diehard comic book fan would likely admit that feats like flying, leaping tall buildings and fighting bad guys don’t hold a candle to the challenges this little boy has already surmounted.

Just last June, Joey was out of town with his family when he had what his parents, Leila and Scott, feared was a seizure. Clinicians in the emergency department dismissed the event as heat exhaustion in the athletic, seemingly healthy boy. But it wasn’t long before he experienced another, full-blown, seizure during a tee-ball game back home in Kansas City.

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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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