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Parents Fundraise for Daughter with Rare Disease ‘OMS’

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2.4 from 10 votes
Thursday, October 31, 2013

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CUPERTINO, Calif., - Because of their love for their four-year-old daughter Keira and a passion for helping others, Naveen and Crystal Viswanatha left Oct. 6 from Palo Alto on a 500-mile bike ride to Los Angeles in order to raise money for OMS.

It’s their way of raising money that will go to researching why Keira was hit with such a dangerous combination of medical problems.

Keira has a potentially fatal combination of two diseases that together affect only ten children per year in the United States: neuroblastoma and opsoclonus myoclonus syndrome, or OMS.

Her parents will never forget the dramatic turn of events three years ago when their daughter’s symptoms progressed from a slight hand tremor to losing her ability to walk, losing the coordination of her limbs, and experiencing full-body tremors.

Her parents rushed her to Lucile Packard Children’s Hospital, where Dr. Karen Effinger and her team in pediatric oncology found a tumor on her adrenal gland, diagnosed her with a neuroblastoma tumor and immediately scheduled surgery.

In addition to the cancer, it was discovered little Keira had the rare OMS, a condition where her body's immune system started producing antibodies to combat her cancer; the antibodies were attacking her nervous system as well, endangering her brain.

The two complex diagnoses launched the Cupertino family on an intense medical journey that included not only surgery, but also immunosuppressive medications, chemotherapy, steroids, and long months of occupational, speech, and physical therapy,

Today, Keira is conquering the two conditions and living a normal life. She walks steadily, makes cookies for her doctors, digs Japanese food and keeps up with any clinic appointments.

“Keira is a remarkable young girl from a remarkable family. She’s doing very well from a neurological standpoint,” said pediatric hematologist-oncologist Dr. Clare Twist. “She certainly is a rare case, but we are hopeful that she will have a very bright future.”

 

 

Source: India West
2.4
2.4 from 10 votes
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