Fariba Nawa – AUTHOR AND JOURNALIST

Living with HIV has few secrets

10-year-old Newark boy with AIDS chooses openness to educate others about his disease
By Fariba Nawa
February 10, 1998
ANG/Oakland Tribune

NEWARK — Ten-year-old Sam Fox takes 27 pills a day.

Three are for depression. The other 24 are for AIDS and its side effects.

The bouncy fifth-grader with the bright eyes contracted the HIV virus in his mother’s womb and developed full-blown AIDS nine months later. It’s a diagnosis few of his classmates at Graham Elementary School know — and few perhaps would believe — of the popular class clown and athlete.

Yet Sam and his adoptive parents have gone out of their way to share what many families would keep a secret. Over the last four years, Sam has spoken on television and before live audiences in a family campaign to educate the public on AIDS His parents, Paul and Marilyn Fox, first started talking about Sam’s disease publicly when they thought he would soon die.

He is still very much alive. But Sam seems all too aware that he lives with death. As early as preschool he warned his best friend that he might die.

“The first thing that comes to mind when I think of being HIV positive is I don’t want to die,” Sam wrote in a speech for Sonoma State University students a few months ago. “I get sad sometimes.”

Sam is one of three children age 12 and under in the Tri-Cities and eight in Alameda County diagnosed with AIDS, according to the state Office of AIDS. Children make up less than 1 percent of AIDS patients in Alameda County, and almost all of them are born with the HIV virus.

AIDS: KIDS MORE VULNERABLE TO GETTING FULL-BLOWN DISEASE

Children must also fight harder than adults to stay alive because they tend to develop full-blown AIDS twice as fast, within five years. Sam has already attended the funerals of two friends with AIDS, who died at nine and 14 years old.

Despite the severity of the disease in children, new treatments and medication are making a dramatic impact on their life spans and health, said Dr. Ann Petra, Sam’s pediatrician at Children’s Hospital in Oakland.

And as the numbers of deaths from AIDS decline, focus is shifting to life with the disease.

Last year, Sam wrote a letter to the Federal Drug Administration pleading for children to be allowed protease inhibitors, the latest drug cocktail then reserved for adults. In August, President Clinton announced that drug companies must test new treatments for children, not just adults.

Children with HIV — small as their numbers are — also present public schools with a potential powder keg. Under the Federal Americans with Disabilities Act of 1990, public schools with more than 15 employees must give equal access to physically challenged children, including AIDS patients.

However, families are not required to disclose to schools if their children have AIDS, or they can ask for the information to be kept private.

Sam’s family has chosen to go public instead.

The Foxes became Sam’s foster parents in his infancy and adopted him at age 2. Soon after, they retired from 15 years of foster parenting sick children. Sam needed all the time they could give him.

As Sam grew older, they told him –and others — that he had AIDS.

Sam seems both to want and avoid open discussion about his illness. He’s most comfortable sharing his feelings about the disease at public gatherings with other AIDS patients present, his mother says.

Yet he is sometimes embarrassed to talk about AIDS with other children, because he says they’ll ask too many questions. He’d much rather talk about soccer.

And when his mother expresses her wish to find a cure for his disease on a recent afternoon, he drops his eyes and stares at his feet.

Marilyn Fox handles media for the family. She seems to talk about Sam’s illness in an attempt to educate the public, but also to find the support she herself needs. Familiar territory

Both the disease and the media are familiar territory for this mother, who has lived through the deaths of two other foster children with the HIV virus. She chooses her words slowly, careful to present the community’s response in a positive light.

Residents in the Foxes’ modest Newark neighborhood who know about Sam’s disease have mostly accepted the family, his mother says. She dismisses any incidents of intolerance as minor, apparently not wanting to dwell on what might be painful.

Yet there have been incidents. Fox matter-of-factly lists them with no anger in her voice, almost as if she had expected them

The first obstacle was enrolling Sam in pre-school. No private pre-school would accept him until the 1990 federal disability act, she says. The caretakers at one school told Fox she had to clean Sam up herself if he bled or soiled his diapers.

Facing prejudice When Sam joined a private elementary school, a mother threatened to take her child out. A family dentist in the area refused to see him. Some of Sam’s friends disappeared as soon as they found out he has AIDS.

Yet Fox — who has three biological and two adopted sons – says she doesn’t get upset at what she calls minor prejudices.

“If I don’t laugh, I cry,” she says. “If you fear my child, then I don’t want you around him.”

Family friend Julia Eggers had known Sam since he went to kindergarten with the now 9-year-old daughter Mary. Eggers was shocked to learn of Sam’s disease from his mother.

“I couldn’t believe this kid was going through this, Sam’s more mature than any of us,” Eggers says.

But her daughter still goes to the movies and on trips with Sam, and Fox babysits her 5-year-old son. Many parents have not shared her attitude, Eggers says.

“Marilyn always worries that when Sam makes a friend, will he keep him?” she says. Indeed, Mary remembers times when Sam was taunted by classmates, who knew about his disease. One girl called Sam stupid and hit him, Mary recounts. He said nothing back.

When Sam told another girl he had AIDS, she stayed away, Mary recalls. Her father apparently feared Sam’s sweat or saliva might give her AIDS.

At Graham Elementary, only Sam’s teachers were told about his disease.

“We decided to be discreet. We didn’t want to stir up the community. People have different points of views,” says Principal Joan Ernst, who is uncomfortable talking about Sam with the media.

Like his mother, Sam avoids talking about painful memories and insists no one has ever treated him badly. If other children taunt Sam about AIDS, his response would be “You won’t catch it,” he says.

HE GETS DEPRESSED

Yet he’s depressed quite often. He goes to his room and shuts himself in with his cat Cagney. He doesn’t like to sleep. So he stays up until the wee hours of the morning at times, reading or just lying in bed.

“It’s boring when I sleep. There are no dreams,” Sam says.

He takes part in an AIDS support group every other week and sees a therapist every month.

Sam has little contact with his biological family, although he occasionally visits his grandmother. The Foxes are his family.

Sometimes Sam seems to forget about AIDS. He plays, whines and gets into trouble like any 10-year-old. At 52 pounds and 3 feet 10 inches, Sam continues to grow, shoot hoops, compete in Little League or soccer, and play Nintendo video games.

“He’s just like a normal kid,” Marilyn says.

That’s a long way from the infant whom doctors predicted would live for two years. Now AIDS experts don’t predict life spans. The Foxes have been told the sky’s the limit.

The couple is hopeful about the future — and so is their son.

Sam envisions wearing a cap and gown, standing in line to receive his high school diploma with the graduation class of 2005. And he dreams of becoming a professional soccer player when he grows up.

Yet in many ways he’s already had to grow up faster than most children his age. “I want people to know how it feels to have HIV,” he says. “So that if they have a friend with it, they won’t tell them, ‘Oh, I don’t want to play with you.'”