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.After he was rushed to the hospital, an MRI scan revealed an old stroke on Joey’s brain and an even scarier diagnosis: Joey had moyamoya disease. In this rare but very serious condition, the walls of the carotid arteries that supply blood to the brain become thickened and narrowed, which can increase the risk of blood clots and, in turn, stroke.

joey is fighting moyamoya disease

Making connections

Ignoring well-meaning warnings from their Kansas City physician not to “Google” the condition, Joey’s parents soon happened upon a YouTube video chronicling another Kansas boy’s experiences with moyamoya disease. Although it had been years since that child’s treatment at Boston Children’s Hospital, Leila and Scott were able to connect with his parents, who recommended Dr. Edward Smith in the Moyamoya Disease Program.

As soon as we arrived at Boston Children’s, we knew we were in the right place because of their depth of knowledge.

Within a month, the family flew to Boston for Joey’s surgery. “We were pleased with our care in Kansas, but moyamoya is a rare disease that not a lot of doctors have experience treating,” explains Leila. “As soon as we arrived at Boston Children’s, we knew we were in the right place because of their depth of knowledge.”

Like any superhero, Joey has encountered his share of obstacles. Following revascularization surgery to improve blood flow to the right side of his brain, he left the hospital well, but unfortunately shortly thereafter suffered a stroke after getting dehydrated at the beach. “It was awful — he couldn’t walk or talk,” says Leila. She credits the hospital’s ICU staff with providing the family with the comfort and support they needed during that uncertain time.

But there was hope, too. “Dr. Smith reassured us that kids’ brains are very plastic,” she says. “He said we’d be amazed at the progress he would make.” Indeed, Joey regained the majority of his abilities after physical and occupational therapy in Kansas City — and just six months after that surgery, those blood vessels had already grown significantly.

the moyamoya disease program

A hero’s journey

“This is an incredibly frightening diagnosis and we were overwhelmed — we still are,” admits Leila. “Sometimes we’re afraid to leave Boston Children’s and go home. But Dr. Smith, Jennifer Klein and the rest of the staff have a very calming effect, and they’ve educated us on Joey’s condition so we can then educate his local care team.” Now, his clinicians in Kansas know to try to keep him from getting overly upset when he exhibits stroke symptoms, sometimes bypassing the emergency department and shuttling him to a private room where he can relax.

In February the family returned to Boston Children’s for a follow-up angiogram, which showed that the blood vessels on the left side and the back of his brain were severely blocked. After consulting with his colleagues in the Moyamoya Disease Program — including Dr. Michael Scott — Dr. Smith decided to perform revascularization in two different areas of the left side of the brain during one surgery, something he had never previously done.

Those procedures went smoothly, and Joey has returned to Kansas. In spite of a few transient ischemic attacks (reversible spells that are not strokes) — sometimes an occurrence after surgery — he’s healing well. He should get protection from the new vessels in weeks to months. However, the recovery from his earlier strokes can take longer: It can take up to two or three years for the nerves to “rewire.”

gallaghers

Getting the word out about moyamoya

In the meantime, this sweet, funny boy is taking things step by step, enjoying time with his parents and big sister, Gia, while awaiting the day when he can get back to playing sports that don’t involve potential head trauma. And his parents have found themselves in a new role — as advocates.

“People don’t think of kids as having strokes, but it can happen,” says Leila. “We’re grateful for the medical teams in Boston and Kansas City and we’re really committed to spreading awareness about moyamoya disease and helping get the word out.” To accomplish this goal, they’ve started a public Facebook page aimed at educating other parents. Its name, fittingly, is @superherojoey.

Learn the latest on moyamoya disease at Boston Children’s annual Moyamoya Family Day event in May.