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Anti-AIDS medications are prolonging life for many teenagers with HIV, but not all. More than 13,000 Americans under age 24 have died since the AIDS epidemic struck in the early 1980s, according to government statistics. Some 4,800 of those reported AIDS deaths were children under age 15.

JACKIE VALENZUELA IS ONE OF THE STATISTICS. The Phoenix, Arizona, girl yearned to celebrate her fifteenth birthday, a coming-of-age landmark observed with great festivities in her Latino community. Jackie's relatives say the irrepressible child lost her fight against HIV; but also won.

In her short life, Jackie Valenzuela saw her family consumed by AIDS. Jackie's mother, father and little brother all died of the disease before it finally killed Jackie, in May, 1998. But she lived long enough to become something extraordinary: a teenager born with HIV.

Adela Valenzuela, Jackie's mother, contracted HIV infection in 1982, a year before scientists identified it as the virus that causes AIDS. During a miscarriage, Adela got an HIV-contaminated blood transfusion. One of the unusual features of HIV infection is that symptoms of the disease typically lurk undetected until several years later. By the time Adela was diagnosed with AIDS in 1987, the virus had infected her whole family. Jackie wrote a 10-page autobiography when she was 13, titled "Jackie's HIV Life."

Adela had a baby girl named Jacqueline (Jackie) Valenzuela. Jackie weighed three pounds. Jackie's grandma, Carolina Cavazos, took care of her since birth. The doctor took tests. They found that Jackie was HIV positive and that Adela had it too; so did the dad, Billy. Later, Adela had another baby, a boy named Billy Valenzuela. They named him after his dad, Billy. Since Adela was the first one to get the HIV virus, the whole family had it.

Two years later, Adela began to get very ill. She began to lose her hair and get sores on her body. She had to give the children to her mother and father because she was too sick to take care of them all. Adela went to the hospital. For two weeks she was in the hospital. She was suffering a lot. She was ready to go with God. After the two weeks, she passed away. It was a very sad time for the family.

Jackie was raised by her grandparents, Carolina and Felipe Cavazos, both custodial workers living in a poor neighborhood of Phoenix. Two doting aunts also helped out. Jackie and her little brother were constantly sick, but Jackie wasn't sure why. She took lots of medicines that she would later learn were anti-AIDS drugs, but the adults never told Jackie she was HIV-positive until she was 12.

"My mom wanted to keep it from her as much as possible," says Jackie's aunt, Elida Chavez. "She felt Jackie might get depressed and want to die like her mother. Jackie's mother was so devastated by HIV that she wanted to commit suicide."

Jackie's little brother died of AIDS-related causes in 1991. Her father followed four years later. In spite of the illnesses, Jackie was a spirited, rascally child. One time she smuggled a handful of baby frogs into her pediatric-disease clinic, then shook hands with the doctor, palming the slimy amphibians. "She just lived day-by-day, to the fullest," says her other aunt, Linda Valenzuela.

School Troubles

Like many adolescents with HIV, Jackie was physically smaller than her peers. She looked more like a 9-year-old than a young woman. Some kids at school would pick on her, Carolina says, teasing her about being so skinny and not having a mom. Later, when Jackie "went public" about her HIV, the torment continued.

"One thing I remember Jackie telling me is that when you're an adolescent, it's all about how you look," says her doctor, Janice Piatt, of Phoenix Children's Hospital. "Jackie had an intravenous medicine port on her chest. And it made a lump, so when the girls were wearing tank tops, Jackie would wear a tank top. They would hassle and tease her about the port."

I am Almost a Teen

I am glad to almost be a teenager (five more months to go). When I become a teenager, I can do what I want, where now I have to ask permission for everything. But having HIV makes being a teenager a little more difficult. I am shorter than the other kids and I get teased about that. Some of the kids have breasts and have started their periods. I don't have any breasts yet and probably won't start my period for years. I don't really want breasts that bad, but I do want to go buy a bra.

So I will be a teenager and a teenager with HIV. That will be pretty cool.

In her diary, Jackie wondered if she would ever have children. She decided 4 would be a suitable number, 3 girls and a boy. She resolved to live to at least the age of 44.

Yet, Jackie also wanted to live a life free of the medicines she had to swallow several times a day. "I'd find the pills in the pockets of her pants," says Caroline. "I'd say, you're doing pretty good, but I don't know what will happen to you if you stop taking them." But in early 1997, Jackie decided to stop taking her medicine altogether.

"She was tired of taking these medications all her life," says Aunt Elida. "I think she wanted to get away from all that and be as normal as she could be. She just wanted to live her life." Elida adds that, as the child of a Christian home, Jackie knew she was going to heaven, where she would see the mother she lost at age four.

Dr. Piatt says one of the greatest challenges for children and teens with HIV is sticking to the strict, demanding medication regime. "These kids don't really think of themselves as HIV positive, they just want to go to the dance next week," she says. "We grownups are all freaking out and thinking, 'You need to take your meds and stay well,' and they're thinking, 'I need a new shirt for the dance next week, or what nail polish am I going to wear?'"

Piatt adds that Jackie's anti-AIDS medications only worked well for a time, and that newer drugs produced side effects Jackie couldn't tolerate.

Jackie's Quinceañera

As Jackie's health eroded, she asked her family if she should turn 15 a few months early. She didn't expect to live that long. In Puerto Rico, Cuba, Mexico, and other Latin American countries, a girl's entrance into womanhood and her eligibility for marriage is celebrated at her quinceañera, typically her 15th birthday. Jackie had gone blind from what doctors believed was an AIDS-related illness, and was already staying at a Phoenix hospice. With donations from well-wishers, her family arranged a quinceañera, complete with the traditional wedding-style dress for Jackie, balloons, mariachi music, a sip of champagne; and a crowd of family, friends, doctors, and nurses.

Jackie's quinceañera photograph shows her standing in the frothy-white dress, a tiara on her head and a lilly in her hands. "That was her last wish," Elida says. "She wanted to wear makeup and put on heels, and to see what it felt like to wear makeup and to feel sexy."

Jackie died six weeks later. She was buried in her quinceañera dress.

While there is still no cure for HIV, the prognosis is no longer so dismal. Children with HIV infection,- those who are more resistant to the disease or have a different strain of the virus or stay vigilant about their medications, are living longer than many scientists and doctors ever expected possible. Some are now attending college. It's changed from a terminal disease to chronic, says Dr. Piatt, more like cystic fibrosis, a disease that ends in an early, but not immediate, death. "I think about their futures," she says.