Three years after a scare left a Cupertino couple fearing for their toddler’s life, the pair is pedaling to Los Angeles with a group of bicyclists determined to raise research money for a terrifying 1-in-10 million condition.
It began when Keira Viswanatha, an outgoing and precocious 18-month-old, woke up in the night, screamed for no reason and was impossible to soothe.
Next came the occasional uncharacteristic missteps and falls — she’d been walking since before age one — and then the weird hand tremors that sent Keira’s parents scrambling to the hospital with no idea what was wrong.
Doctors initially suspected the girl had a brain tumor. For Keira’s father, the scariest part was when they found out she didn’t.
“It was late at night in the hospital, and at first we were relieved when we were told,” said Naveen Viswanatha, a 35-year-old product manager at Google.
But then his daughter was diagnosed with opsoclonus myoclonus syndrome, or OMS, a condition that afflicts about 10 children in the United States a year. It’s considered an “orphan disease,” he said, one that hasn’t been well-researched because of its scarcity.
“With a brain tumor, at least you know what you are fighting,” Viswanatha said. “With this, no one has any idea. Learning what little is known about this disease, I felt so far removed from medical science being able to help us.”
Dr. Karen Effinger, of the pediatric hematology-oncology department at Lucile Packard Children’s Hospital at Stanford, said most cases of OMS are associated with “low-grade tumors that tend to go away on their own.”
In Keira’s case, it was affiliated with neuroblastoma, a cancer growing on her adrenal glands. That tumor was surgically removed before spreading and isn’t expected to return, but it triggered a secondary condition.
“It’s an autoimmune response,” said Effinger, who has seen Keira so many times that they’re cookie-sharing close. “Her body is trying to fight off the neuroblastoma, and in the process it forms autoimmune antibodies that cause the symptoms.”
OMS used to be called “dancing eyes syndrome” in England because of the rapid sideways eye movements that often accompany the disorder, Effinger said. While Keira didn’t exhibit that symptom, she had the other hallmarks of an attack on the body’s motor system: an inability to walk, trembling hands and the full-volume tantrums that are inconsolable.
“I was talking to another parent whose child had OMS while they were in Haiti,” Keira’s father said. “When this happened to their daughter, they were told to go see a priest.”
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