Seeking answers in teen's fatal illness

Newsday
Shana Kay graduated last year from Commack High School with a certificate for perfect attendance.

"It was a testament to her health, and her willingness to show up and work hard," her father, Randy Kay of Commack, said yesterday.

A year later, the 19-year-old college student got a virus, and died for reasons the family could not explain.

"It doesn't seem real," her brother, Jared Kay, 22, said. "I don't think it ever will."

After completing her first year at the University of Wisconsin at Madison, where she was studying speech pathology, Kay returned to New York to spend the summer as a counselor at her second home, Camp Kinder Ring in Hopewell Junction, N.Y.

As a child, she had camped there every summer, working her way up to counselor three years ago. She returned June 20. But on June 29, the camp infirmary tested her for mononucleosis because Kay was complaining of fatigue. On July 1, she learned she had mono and reported to the camp infirmary.

But mono was not her concern. She was feeling agitated and couldn't answer simple questions. After a few minutes, she forgot her father's name, then her own. Half an hour later, she was transferred to Vassar Brothers Medical Center in Poughkeepsie.

A spinal tap test indicated she had a viral infection, but the type and origin was unknown, her father said. Dr. Daniella Stokes, an infectious disease specialist at Vassar, told the family she thought Kay had a parasitic virus resulting from a tick bite.

Then the situation turned. An MRI, also administered by Stokes, indicated Kay's brain was swelling and getting crushed against the inner surface of her skull.

After two CT scans, Stokes diagnosed the young woman with viral encephalitis, or inflammation of the brain caused by a virus. Stokes also informed the parents that her eyes were not responding to light, meaning she was quickly losing brain reflexes, Randy Kay said.

Kay was transferred by helicopter to Columbia University Medical Center's Neurological Intensive Care Unit in Manhattan.

"Until then, we were frightened but hopeful," said Sandy Kay, Shana's mother. "We were optimistic because she had youth and health on her side. It wasn't until the last 14 hours that we realized we could lose our daughter. It was too shocking to process."

After a couple of hours, Shana Kay was declared brain dead. It was July 2, 36 hours after she had walked into the camp infirmary.

"How does a child go from healthy to brain dead in 36 hours?" said Randy Kay, who is a dentist practicing in Huntington. "But even those answers won't bring my daughter back."

Even the doctors are baffled.

Her father said autopsy results ruled out Lyme disease, rabies, West Nile virus, leukemia and HIV, and doctors are unsure if mono influenced the death. But it is very likely, Kay said, that mono taxed her immune system, making her body less equipped to fight the virus.

The attending physician at her death said the young woman may have died from acute disseminating encephalo myelitis, meaning her immune system responded so ferociously to the virus that the resulting inflammation and swelling caused her death.

"Her own body was attacking her brain cells," her father said. "A virus entered her system and wreaked havoc."

A funeral Wednesday at Gutterman's Funeral Home in Woodbury drew more than 1,000 family and friends.

"It was a tremendous tribute to my daughter and our family is forever grateful for their love and support," Randy Kay said.

Commack High School is collecting donations to the Shana Kay Scholarship Fund.