Nikolas Emerson bounds from the backseat of his mother's car toward the Union Street Park children's playground with all the energy of a typical 4-year-old. "Help me!" he calls out as he negotiates a swinging bridge of tires. When Nikolas at last reaches the far end of the span, he squeals in triumph, "I did it!"
September sun pours down on this quiet corner of Bangor, Maine. But for Nikolas, who has the virus that can cause AIDS, there may be dark days ahead. Born with HIV, which his mother, Valerie Emerson, and father, Ryan Dubay, both carry, Nikolas appears healthy today, but this time last year he was incapacitated by chronic stomachaches and leg pains and had all but stopped growing.
Emerson, who lost her 3-year-old daughter Tia to AIDS in 1997, knows only too well that her son's disease is incurable. But she also blames AZT, a highly toxic anti-retroviral medication, for his rapid decline last year. Like Tia before him, she says, Nikolas seemed healthier without the powerful drug, which he took for 10 weeks. "He went from being a little boy who was active to being a little boy who lay on the floor and cried," says Emerson, 27, whose two other surviving children, Zakary, 6, and Jakob, 2, are free of the virus.
She took Nikolas off AZT last fall, but by March two doctors advised Emerson, a welfare mother, to begin treating her son with an aggressive new "cocktail" of drugs that included AZT to combat HIV-related symptoms. She refused. Officials from Maine's Department of Human Services accused her of endangering her child's health and began legal proceedings to take custody of Nikolas.
Still, Emerson refused to back down—"I get stubborn when I feel I'm not being listened to," she says—and fought back using $3,000 donated by a sympathizer in Florida who had read about her situation. On Sept. 14, after a four-month legal struggle, a district court judge in Newport, Maine, upheld her right to determine her son's treatment, in part because the effectiveness of therapies varies so drastically from patient to patient. Emerson "has placed her faith in [recommended treatments] in the past and lost a child," wrote Judge Douglas Clapp in his decision. "The State of Maine is now in no position to tell her in the face of her unique experience that she is wrong."
If anyone could use a victory in her life, it is Valerie Emerson. Born in Columbia, Maine, the child of a divorcee who became involved in a string of stormy relationships, Emerson spent five years in foster homes and was working as a hotel maid in 1991, when she became pregnant with the first of three children by Dubay, now 35. (Jakob is the child of a later relationship.)
The couple never wed, and Emerson ended what she describes as a violent relationship after five years. Indeed, she had a restraining order against Dubay when he arrived uninvited at her house in the fall of 1995. "I had the cordless phone in my hand and said, 'I'll press 911 in a heartbeat,' " she recalls. Dubay blurted out that he had AIDS and slammed the door behind him, she says.
Emerson soon tested positive for HTV too, though her close friend Barbara Witherly says she rarely worries about her own health. "It's not about her," says Witherly. "She needs to be strong for her children." Following doctors' orders shortly afterward, Emerson put Tia on AZT—then commonly used on its own by both adults and children with HIV—and watched helplessly as pneumonia sapped the girl's strength. Tia died on Jan. 22, 1997, five days shy of her fourth birthday.
Believing AZT hastened Tia's death, Emerson was at first reluctant to put her son on the drug (although the boy's father sided with the state). Yet even though she is now free to choose his treatment, Emerson hasn't entirely ruled out AZT in the future—if Nikolas becomes seriously ill and she feels he has grown strong enough to endure side effects that can include debilitating diarrhea and anemia. According to Nancy Hut-ton—director of the AIDS program at Johns Hopkins Children's Center in Baltimore—the drug, when used in combination with other medications, is helping pediatric AIDS patients survive into their teens and beyond.
Nikolas, meanwhile, is putting on weight and growing taller. Valerie gives him vitamins, and also antibiotics prescribed to fight ear and sinus infections. And though she tries not to favor him over Jakob and Zakary, she smothers Nikolas with love. "One of my children died because I did what I was told to do," she says. "The other one is still living because I did what my heart told me to do."
Tom Duffy and Mark Dagostino in Bangor
- Tom Duffy,
- Mark Dagostino.