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.”

 

To read more and learn how you can help Keira and her family please visit the original article athttps://www.mercurynews.com/bay-area-news/ci_24247579/cupertino-couple-rides-raise-awareness-rare-disease-that.

3 thoughts on “California Couple’s Daughter Diagnosed with Opsoclonus Myoclonus Syndrome”

  1. michelle says:

    Hi my name is Michelle I was looking up info on OMS an I found your story my 6 yr old daughter actually ended up in the hospital on 12/26/14 with the rapid eye movement an inability to walk or talk an after 3 weeks at Loma Linda Children’s Hospital she was diagnosed with OMS an they found what they this is neuroblastoma on her left adrenal glad we started ivig in hospital an she’s on her 3rd treatment an doing well now an continuing test for the neuroblastoma I wanted to know have they taken your daughter’s neuroblastoma out an if so how is she doing now

  2. Tracy says:

    My son has oms

  3. Danielle says:

    I have just found out that my lb who is 21mths has oms he has some scans and that on Friday I’m so scared and worryed! I just wish it was me not my baby and I just wanna talk to people who are going though the same as I’m all new to this also a first time mommy

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