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Nikolas Emerson, 11; case led to legal fight over HIV

KENDUSKEAG, Maine -- An 11-year-old boy who as a toddler was at the center of a prolonged legal battle over treatment of the virus that causes AIDS died last week at his home in this town outside Bangor.

The case involving Nikolas Emerson drew international attention when the Maine Supreme Judicial Court ruled in 1998 that state officials could not force his mother, Valerie Wilks, to treat him aggressively with three powerful AIDS drugs.

The family would not say whether Nikolas's death was AIDS-related.

''Valerie is not quite ready" to speak publicly about her son's death, according to her mother, Patricia Zebulske.

Nikolas was a pupil at Morison Memorial School in Corinth.

Wilks, who was at her son's side when he died on March 2, discovered that she was HIV positive when she was pregnant with one of her sons. Tests were done on her three older children, and two -- Nikolas and his sister, Tia -- came back positive.

Tia, like her mother, had been taking the AIDS drug AZT. But the girl, who had been sick on and off with pneumonia, reacted badly to the medication and died a painful death in her mother's arms in 1997, shortly before she turned 4.

Wilks's much-publicized battle for a mother's right to make medical decisions for her child became a lightning rod for others in similar situations.

In the aftermath of the Supreme Court ruling, Wilks told reporters that she had little faith in government statistics about the prospects for children such as Nikolas, born with HIV. The Centers for Disease Control said those who follow a regular regime of AIDS treatment had a life expectancy of at least 20 years, while others who forgo treatment were only expected to reach age 9.

''Parents with kids who have HIV have rights, too," Wilks said. ''All any parent can do is follow their heart."

In its decision, the Supreme Court left the door open to revisit its decision if Nikolas's condition worsened, more data became available, or new medical treatments were developed. There is no indication as to whether the state readdressed the issue.

Nikolas leaves his mother and brothers, Zakary and Jakob.

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