Full circle: From moyamoya patient to intern

treatment for moyamoya disease

It’s the last day of Justin Doo’s research internship in the Department of Neurology at Boston Children’s Hospital and he’s eager to join the team for a celebratory scoop of ice cream at JP Licks. Before he leaves, he meets with his supervisor, Dr. Laura Lehman — but they both know this isn’t a final goodbye. The 18-year-old will see Dr. Lehman again within the year, because he isn’t just her intern. He’s also her patient.

Unlike most summer interns, Justin has already spent plenty of time at Boston Children’s — more than a decade, in fact. When he was 7 years old, his parents brought him to the hospital for an evaluation of his frequent headaches. But a magnetic resonance imaging (MRI) scan revealed that what everyone believed to be migraines were actually symptoms of a rare but serious cerebrovascular condition called moyamoya disease. “I didn’t really understand what was going on at the time,” remembers Justin. “I just knew that my parents were crying.”

moyamoya disease
Justin meets with Dr. Laura Lehman.

Pial synangiosis: A groundbreaking surgery

In this disorder, 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. Because moyamoya is a progressive condition, the longer it goes untreated, the more a child’s chances of having a stroke increase. For this reason, Dr. R. Michael Scott, now Boston Children’s neurosurgeon-in-chief-emeritus, recommended surgery as soon as possible.

Dr. Scott performed an 8-hour procedure that he had developed, called pial synangiosis. This surgery redirected an artery from Justin’s scalp to his brain, where it would stimulate the growth of new blood vessels and improve blood flow. Although pial synangiosis doesn’t cure moyamoya disease, it is the only approach that’s been proven to be a long-term treatment for the condition.

moyamoya disease treatment

Giving back

When he returned home from Boston Children’s after surgery, Justin’s two younger siblings were understandably worried about him. Without prompting, they decided to sell some of their toys and donate the proceeds to the hospital that helped their big brother. That sweet gesture marked the beginning of a fundraising movement by the Doo family to express their gratitude. “My doctors gave me my life back,” says Justin. “I feel that I have the responsibility to give back to them.”

What began as a simple yard sale has blossomed over the years into a full-fledged annual fundraising event that includes a basketball tournament, carnival games and a 5K run/walk. Justin’s efforts recently earned him a 2017 Myra Kraft Community MVP Award from the New England Patriots Charitable Foundation. To date, supporters have raised more than $300,000 for moyamoya research at Boston Children’s, helping fund important studies by Dr. Edward Smith, Dr. Darren Orbach and their colleagues at the Moyamoya Disease Program into the causes and care of the disorder.

moyamoya research internship

“A light at the end of the tunnel”

It’s one such research project that brought Justin back to the hospital, this time as an intern. Aware of his interest in biopsychology — the study of the relationship between brain function and behavior — Dr. Lehman suggested that he might want to shadow her at work. “I’ve always been interested in how and why people think the way they do,” says Justin. “I jumped at the opportunity.”

Now a freshman at Loyola University in Maryland, Justin spent his summer helping with an observational study, which aims to track emotional outcomes of children with moyamoya disease and their parents before and after surgery. While he’s excited to see how the study turns out, Justin has found that the process itself may be just as meaningful. “As a survivor of the disease, I want other kids with moyamoya and their parents to know that there’s a light at the end of the tunnel,” he says. “You have moyamoya, but it doesn’t have you.”

Learn about the Moyamoya Disease Program.