A Precious Child With a Special Burden |
Washington Post Staff Writer
Wednesday, August 18, 1999; Page A1
Precious Thomas was 2 years old and too tiny to reach the microphone from her seat next to the disc jockey at a D.C. gospel radio station.
Looking like a pretty brown doll in a frilly dress, matching hair bows and socks, she climbed onto her mother's lap, donned a headset and delivered her speech.
"I have a bad bug in my body," she began. "The bug makes me sick."
It was the first time that Precious, who lives with her mother, Rocky Thomas, in District Heights, talked publicly about life with HIV, the virus that causes AIDS. But on that Saturday morning in 1993, the articulate child with the frightening, fatal illness started down the road to an unlikely kind of celebrity.
In the Washington area, Precious, now 8, has become the public face of children with AIDS. With her hair pulled into thick, black twists and her narrow face framed by wire-rimmed glasses, she has appeared on posters and postcards. She has been swooped into the arms of more politicians, entertainers, activists and athletes than she can recognize. Speaking requests are so frequent that she has red-and-white business cards.
Precious is in demand, in part, because she is African American. HIV and AIDS have spread rapidly and disproportionately among African Americans, and nowhere is the gap more evident than among the children younger than 12 who have been infected.
Children make up a small percentage of the total AIDS caseload. But of the 4,358 AIDS cases reported among children younger than 12 in the United States through December 1998, nearly 57 percent were among African Americans. Twenty-three percent were among Hispanics.
In the District, the proportions are even more startling. All but three of the 168 AIDS cases reported among children in the same time frame were among African Americans.
As with adults, new medical treatments have extended the lives of infected children. With a new regimen that involves giving the drug AZT to pregnant women infected with HIV, fewer children have been born with the virus in recent years.
But despite laws designed to prevent the isolation and harassment that made headlines in the 1980s, the disease still carries a dreaded stigma. In many families, the secret is often guarded so closely that the truth is hidden even from the infected child, medical professionals say.
Secrecy was not in Rocky Thomas's nature.
When she learned that the 1-year-old girl she planned to adopt was HIV-positive, she shared the burden with family, friends and church. She also taught Precious about the "bad bug."
"When they're sticking her and taking her blood, she needs to know what's happening to her," Thomas said.
Part of Precious's appeal is this: Her innocence can soften even the most judgmental hearts. She can win access to places where talk of HIV and AIDS are generally off-limits -- such as African American churches.
Ask Precious why she gets so much attention, and she will tell you.
"Because I have HIV, and I talk about it," she said.
But sometimes, the load can get pretty heavy for an 8-year-old girl who can't help wondering whether she will have a future.
A Loving Home
"You forgot something, little girl," PaPa said, as Precious dashed into her family's apartment from school and headed to the refrigerator.
Dressed in blue shorts and a white shirt, her school's summer uniform, she rushed to the dining room table, threw her arms around his neck and pressed her face against his.
PaPa is 77-year-old Nathaniel Walker, who shares a Prince George's County apartment near the District with Precious and his granddaughter, Thomas.
Named Sheree Marbella Henson at birth, Precious was 2 weeks old when her drug-addicted birth mother handed her to Walker's daughter, Linda, at the time also a drug addict.
Nathaniel Walker felt sorry for the premature baby. He often drove to his daughter's home, wrapped the child in blankets and took her home with him. He and Thomas kept her for days at a time. One day, Thomas just never sent her back.
"It's hard to believe I could fit that little girl right here when we first got her," Walker said, extending his right hand as if to catch a ball.
Thomas was a newlywed who lived with her grandfather and four children -- two stepchildren and two cousins she was helping to raise.
With brown skin and deep brown eyes, the new baby was pretty and precious. So that's what everyone started calling her.
For Precious's first birthday, Thomas, a beautician, planned a Saturday bash. She bought balloons and favors, sent invitations and ordered a cake. But the day before the party, an aunt who was baby-sitting Precious called from a hospital emergency room. Precious was sick.
Thomas rushed to her adoptive daughter's side. Four of her customers -- some with hair still wet -- tagged along. Precious had pneumonia. The next week, Thomas learned that Precious was infected with HIV.
"I was numb," Thomas said. "All I could think about was death."
A less committed adoptive mother might have backed out of the child's life. Instead, while Precious was in the hospital, Thomas finalized the adoption.
In an odd way, Thomas had been prepared for this day. On television once in the late 1980s, she had seen Hydeia Broadbent, a beautiful African American child, then about 5, with puffy cheeks and a frilly lace dress. Hydeia, who has AIDS, spoke eloquently about the "bad bug" in her body.
Thomas had never seen an African American parent or child speak out in such a way. Hydeia and her mother left an impression, and Thomas eventually became friends with the Broadbents.
In her first few years of battling the disease, Precious was in and out of the hospital regularly. Doctors prescribed a liquid form of AZT, a bitter elixir that Precious strongly disliked. To help make the routine easier, family members would gather around Precious, clap and sing: "Medicine time, medicine time, Precious, it's your medicine time."
"She'd take her medicine and start clapping," Thomas recalled.
By age 2, curious and smart, Precious was learning to read. She memorized easily. She could recite the 39 books of the Old Testament and the parts of the digestive system. She also could explain that the "bad bug" was destroying her immune system.
That amazed Tracy Morgan, a gospel radio announcer, who stopped by Thomas's home one day in 1993 to get her hair styled. She knew little about AIDS, but Precious made her want to learn.
"No one in my family had experienced it," Morgan said. "Then she came into my life. So, I began educating myself and pretty much became a voice speaking about it on the airwaves myself."
Before leaving that day, Morgan had some advice for Thomas: "We have got to get this child into the churches and on the radio," she said.
A Special Child
The glittery phase of the little girl's journey has been recorded in a blue plastic scrapbook:
Pictures with President Clinton, civil rights icon Rosa Parks, Attorney General Janet Reno, Nation of Islam leader Louis Farrakhan and NFL quarterback Warren Moon. Backstage meetings with entertainers Patti LaBelle, Lola Falana and Brian McKnight. Dinner with the late singer Phyllis Hyman.
It all began with the radio interview Morgan set up. Precious was invited to speak at one church, then another. AIDS organizations began calling.
"Hello, my name is Precious Thomas," she would say, opening her speech. "I am special for many good reasons. I am a child of God. My family loves me very much, and I am a beautiful, proud African American young lady. I am also special for one not-so-good reason. I am HIV-positive."
At first, Thomas rarely turned down invitations. Like the Broadbents, she wanted Precious to raise awareness about HIV and AIDS, especially among African Americans.
"I took a stand," she said. "I saw children in the hospital who were absolutely isolated. I couldn't do that to her. If you were going to be part of her life, you were going to be part of her life, whether she had the virus or not. I have never regretted that decision."
Besides, she said, Precious seemed comfortable in the spotlight. But at times, the girl couldn't help acting her age.
During a speech before the Congressional Black Caucus last year, Precious revealed that she was taking a serum that had not been approved by the Federal Drug Administration. The serum, she said, had improved her health. Reporters gathered around her for a comment.
As the media geared up for a profound sound bite, Precious flashed her eyes at Thomas and said: "Mommy, I just need to go to the bathroom."
The interview was done.
Many groups have been charitable to Precious. The Children's Miracle Network sent her to Disney World. The Make-a-Wish Foundation gave her a birthday party at a Lanham restaurant and sent her and six family members on a Disney cruise to the Bahamas in July. Precious also was chosen to attend Camp Heartland, a safe haven outside the Twin Cities in Minnesota for children affected by AIDS.
But these days, Thomas says "no" more often to speaking requests. She set up a trust fund for Precious and bought business cards that list the child as a motivational speaker. Without a job or support from her ex-husband, Thomas said, she struggles to pay her bills.
She gave up her beauty business, she said, because caring for Precious is a full-time job. Precious is enrolled in a clinical drug trial at the National Institutes of Health in Bethesda, and the two of them frequently spend a week at a time there.
"No institution in the world is going to understand that every time my baby is sick, I have to go," Thomas said.
But Thomas and her friends say that some groups and individuals have taken advantage of Precious. Last year, a church advertised that a gospel concert would benefit Precious, but she never saw a dime, Thomas said.
"All we get is promises," Thomas said. "I try to do things with Precious to let her help this one or that one, but who's helping her?"
Precious receives Social Security, which helps to cover her private school tuition and dance lessons.
For the past year, Precious has been energetic and healthy. On any given afternoon, she is romping in the playground behind the apartment, climbing up and down the top bunk in her room, running through the house -- all activities she could barely handle last summer. Small for her age, she wears a girl's size 5. Last summer, a toddler's size 4 was baggy.
Precious knows how to take her own medicines, a handful of pills five times a day -- at 5 and 7 a.m. and 3, 5 and 11 p.m. "I have gotten used to it," she says.
But how long the child can survive is uncertain.
"We have many, many kids born with HIV, living into their teens and beyond," said Pauline Thomas, coordinator of the Pediatric HIV/AIDS Surveillance Project for the New York City Department of Health. "The kids benefit from new treatments. But we don't know yet what their survival rate is."
When asked about her fears recently, Precious, who had been playful just minutes earlier, got quiet.
"I don't like to bring it up," she said, standing in the parking lot outside her home. "I don't want to say it."
She studied her feet, twirled her thumbs. She turned the question on the one who asked it:
"If you had HIV, what would be the scariest thing?" she asked.
"People die from it," she said finally, staring at the pavement.
She never looked up.
© 1999 The Washington Post Company