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A positive life: valiant to the end

/ Source: Special to

Anti-AIDS medications are prolonging life for many teenagers with HIV, but not for all. More than 13,000 Americans under age 24 have died since the AIDS epidemic struck in the early 1980s. Some 4,800 of those deaths were in children under 15. Jackie Valenzuela is one of the statistics. Her relatives say their irrepressible child lost her fight against HIV — but also won.

Among the many extraordinary things about Jackie Valenzuela was this: She was a child born with HIV who survived long enough to become a teenager. In her short life, Jackie saw her family consumed by AIDS. Her mother, father and little brother all died of the disease before it finally killed Jackie, in May 1998.

Adela Valenzuela, Jackie’s mother, contracted HIV infection after a miscarriage, when she received an HIV-contaminated blood transfusion. One of the features of HIV infection is that symptoms of the disease typically lurk undetected until several years later. Adela had no idea she was infected when she gave birth to Jackie.

Jackie described the events in a 10-page autobiography she wrote when she was 13. She called it, “Jackie’s HIV Life.”

Adela had a baby girl names Jacqueline (Jackie) Valenzuela. Jackie weighed three pounds. Jackie’s grandma, Carolina Cavazos, was taking care of her ever since she was born. The doctor took tests. They found that Jackie was HIV-positive and that Adela had it too, and 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 work as janitors and live in a poor neighborhood of Phoenix. Jackie’s two doting aunts also helped out. From birth, Jackie and her little brother were constantly sick, but Jackie didn’t know exactly why. She took lots of medicines that she would later learn were anti-AIDS drugs.

“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 finally learned that she, too, had HIV when she was 12.

Jackie’s little brother died of AIDS-related causes in 1991. Her father died four years later. In spite of her own 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 and to the fullest,” says her aunt Linda Valenzuela.

School troubles 

Like many adolescents with HIV, Jackie was physically smaller than her peers. At 14, she looked more like a nine-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

In her autobiography, Jackie wrote,

“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 concluded four would be a suitable number, three girls and a boy. She also resolved to live at least to age 44.

Yet, Jackie also wanted to be free of the medicines she had to swallow several times each day. “I’d find the pills in the pockets of her pants,” says Carolina. “I’d say, you’re doing pretty good, but I don’t know what will happen to you if you stop taking them.” In early 1997, Jackie decided to stop taking the drugs altogether.

“She was tired of taking these medications all her life,” says 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 a devout Christian, Jackie was certain she would go to heaven and see her mother again.

Piatt says one of the greatest challenges for children and teens with HIV is sticking to the strict, demanding medication regimen. It can be especially difficult for children who feel pretty well. “These kids don’t really think of themselves as HIV-positive, they just want to go to the dance next week,” she says. “We grown-ups 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 says that Jackie’s anti-AIDS medications began to lose their power, and newer drugs produced nasty side effects. “Protease inhibitors did prolong her life but in the end she did not tolerate what she was on,” Piatt says.

Jackie's Quinceanera

The Phoenix girl yearned to celebrate her fifteenth birthday, a coming-of-age landmark observed with great festivities in her Latino community.

As her health eroded, she asked her family if she should turn 15 a few months early. In Puerto Rico, Cuba, Mexico and other Latin American countries, a girl’s entrance into womanhood and her eligibility for marriage is celebrated in an event called a quinceaòera, typically observed on her fifteenth birthday. Jackie didn’t expect to live that long.

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 quinceaòera, 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 quinceaòera portrait shows her standing in the frothy white dress, a tiara on her head and a lily in her hands. She’s smiling with delight. “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 quinceanera dress.

While there is still no cure, for many children with HIV the prognosis is no longer so dismal as once thought. Children with HIV infection — those who are more resistant to the disease or have a weaker strain of the virus or stay vigilant about their medications — are living longer than many scientists and doctors originally thought possible. Some are now attending college.

“It’s changed from a terminal disease to chronic,” says Piatt, more like cystic fibrosis, a disease that ends in an early, but not immediate, death. “I think about their futures.”

The Positive Life was produced by American RadioWorks, the national documentary unit of Minnesota Public Radio. The project was produced by Stephen Smith and Stephanie Curtis. Special thanks to Joe Richman of the American Diaries radio series.