Stories about: Dr. Darren Orbach

Courtney’s story: Piecing together a genetic puzzle

Courtney, who has Loeys-Dietz syndrome poses after her college graduation. Courtney Whitmore was born 22 years ago with a cleft palate, two clubbed feet and fists that were so tightly clenched they couldn’t be pulled apart. Since Courtney was an otherwise happy and healthy baby, neither her parents nor her doctor saw cause to be concerned about these seemingly unrelated conditions. What they didn’t realize was that these were the first clues to a genetic puzzle that would take ten years to unravel.

The next clue came at age 3.

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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.”

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Hope for Leonce: Kenyan boy’s incredible journey with vein of Galen malformation

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Boston is a long flight from Kenya — 22 hours long, in fact. That’s enough time to sleep, eat, read, watch countless YouTube videos and do it all over again, an experience that could make adults antsy, let alone two little boys. Yet it was a journey that Jane Nduta and Humphrey Njogu were eager to make.

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A father’s hope for his son’s life

Juan and Fredy pictured in 2017, nearly one year after Fredy's tumor was removed.
Juan and Fredy in 2017.

Juan was looking forward to having his son, Fredy, 14, finally come home to live with him. The teenager had been living under the care of his grandmother since he was a toddler.

But on that long-awaited homecoming day, Juan was quickly jarred from feeling great joy to grave concern.

“When I saw his face, one side looked very different from the other and his lip was swollen,” says Juan. “He admitted right away that his face had been hurting.”

Juan remembered that the last time he’d seen his son — more than one year ago — Fredy’s face had looked slightly different then too. But whatever was happening, the situation had clearly become much worse since then. Something was undeniably very, very wrong.

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