For most of her 12 years, Hydeia (pronounced High-dee-ah) has been speaking up for children with AIDS. At the Republican Party's convention last week in San Diego, she appeared at the podium with AIDS activist Mary Fisher. Waiting backstage, Fisher, 48, says she turned to Hydeia and asked, " 'Are you nervous?' And she said, 'No, are you?' She was so cool."
Hydeia's poise in the public gaze is no surprise. Since being featured as a 5-year-old in a National Institutes of Health video, she has been a virtual poster child for pediatric AIDS. Susan DeLaurentis, a cofounder with Elizabeth Glaser of the Pediatric AIDS Foundation, remembers the loving bond between Hydeia and Glaser, who died of AIDS in 1994. "Whenever Elizabeth was going through a bad time, she'd say, 'There's one person who's my hero. Hydeia.' "
Sponsored by her privately funded Los Angeles foundation, Hydeia speaks to audiences around the country, from youngsters to college students. Dr. Philip Pizzo, her physician for seven years, says, "She really has an inner sense of the impact of her disease, and she's able to relay that message to others." Adds Mary Fisher, who has known Hydeia for about three years: "She doesn't want to see other children get this disease. It's not. an easy disease to live with."
Few know this better than Hydeia herself. Her mother, a drug user, had abandoned her as a newborn in the same Las Vegas hospital where Hydeia discovered Trisha. Patricia, 49, a former social worker, and Loren, 43, a glass contractor, adopted her when she was 6 weeks old, and she was sickly for three years before they learned she had contracted HIV from her mother, who is now deceased. (A biological brother, also infected with HIV, is 9 and has been adopted by another Las Vegas family.)
With tears pooling in her eyes, Patricia recalls how hospital officials "told me she would probably only live to be 5." By the time she reached that age, Hydeia had developed full-blown AIDS and was often dangerously ill during the next three years. From the outset, Patricia "started talking to her about it. I just never let it be a secret. I explained to her that people might have a problem with it, but we weren't going anywhere." Medicines like Bactrim and Prednisone helped bring the symptoms under control, but Hydeia hasn't attended school since first grade. "I was sick a lot and couldn't keep up with the other kids," she says. A tutor comes by three days a week, and she's right up there academically with her fifth-grade peers.
Indeed, surrounded by her big, affectionate family Hydeia seems like any normal adolescent despite her disease. Besides Hydeia and Trisha, now 4½, there are sisters Kalani, 26, and Briana, 15, and brothers Kendall, 32, and Paige, 25. Trisha is Hydeia's favorite coconspirator. "We play Sega games, we play Barbies, we go out to the playhouse, we go swimming, and," she adds mischievously, "we bug our older sisters." Before going off to a meeting in Washington last year, Hydeia festooned herself with removable tattoos: a dragon on her neck, a peace sign on her shoulder and a space alien on her leg. But, she sighs, "my mom made me take them off."
In Hydeia's bedroom at home is her neatly arranged collection of key chains, hair ribbons and jewelry; photos of pop idols are plastered on the walls. She treasures autographed pictures of famous people she has met, including Oprah Winfrey, Reba McEntire and Janet Jackson. For all the attention that she has received, Hydeia has kept a level head on her tender shoulders. "I'm not into politics," she said after the convention. "Somebody asked the other day whether I was a Republican or a Democrat. I'm just a kid."
JEFF SCHNAUFER Las Vegas, PATRICK ROGERS in San Diego and ANNA DAVID in Los Angeles