CUPERTINO -- 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 1 -- 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."


Advertisement

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."

Keira Viswanatha, 4, swings on a tree at a park near her home in Cupertino on Oct. 5, 2013.  Her father, Naveen Viswanatha, left, and mother, Crystal
Keira Viswanatha, 4, swings on a tree at a park near her home in Cupertino on Oct. 5, 2013. Her father, Naveen Viswanatha, left, and mother, Crystal Viswanatha, ride their bikes in the background. (LiPo Ching/Staff)

Crystal Viswanatha said her daughter would stare right through her during her tantrums.

"It did feel like it was out of 'The Exorcist,' " she said. "I thought, 'My baby is crazy right now. The kid is not being herself.' "

Given an experimental cocktail of drugs that inhibit the immune system, Keira quickly responded. After a week of treatment, she was suddenly back on her feet.

"She asked me to get her brown stuffed bear, and I said, 'Why don't you go get it?' " Naveen Viswanatha said. "She stood up and walked over in such a nonchalant way that I was like, 'Seriously?' "

Now a 4-year-old tomboy who loves the color blue, Rainbow Dash from "My Little Pony" and singing along to "The Lion King," Keira raced around the family's Cupertino house Friday, playing with her 2-year-old sister, Akemi, and hamming it up.

Keira is now in preschool. And while the drugs stunted her growth and left her a head shorter than her colleagues, teachers say she's an outgoing student and a natural leader.

But she's not in the clear. So little is known about OMS, the Viswanathas can only hope that eventually Keira can be taken off all the medications and that the disorder won't recur later in life.

The couple decided to start raising money specifically earmarked for researching OMS. Naveen Viswanatha said there's no incentive for pharmaceutical companies to finance research into the disease because it's too rare to make any new drug profitable.

So on Sunday they will begin a 500-mile bicycle ride to Los Angeles in hopes of getting the pot closer to $100,000. Naveen Viswanatha did a bike ride last year, and they've also done successful hiking fundraisers that have garnered great support from family and friends.

The ride is being done in conjunction with the Pablove Foundation, a group dedicated to raising funds and awareness about pediatric cancer. Viswanatha said their group of four riders is the first "family fund" working with the group for a specific goal. He hopes it will encourage other people affected by OMS to get involved in raising money to study the disease.

"When you're a parent in a situation where your child has this rare, potentially debilitating disease that isn't being researched," Viswanatha said, "you want to do something about it."

Contact Eric Kurhi at 408-920-5852. Follow him at Twitter.com/erickurhi.

HOW TO HELP

To donate toward the Viswanathas' fundraising ride, visit http://stayclassy.org/teamv
For more information on the bike ride or the Pablove Foundation, visit www.pablove.org/