Chicago Tribune - February 16, 2003
Meg McSherry Breslin, Tribune staff reporter

Sitting on a worn couch inside her Northwest Side apartment, she looks and sounds like a typical, ambitious 16-year-old, pulling good grades, squeezing in school activities, dreaming of becoming a lawyer.

She lives secretly with HIV, the virus that causes AIDS.

"It feels like a weight is on me," she says softly, her petite shoulders collapsing.

Still, the fact that she's made it this far gives her hope. And now, she has a rare opportunity--what public health advocates believe is the first college scholarship in the Chicago area for adolescents with HIV and AIDS.

The scholarship is meaningful not only because it's a first but also because the teens are even alive to apply for it.

Nationwide, more than 27,000 youths ages 13 to 24 are infected with HIV, including many who acquired the virus as infants from their mothers. With the help of new medicines, many of those children are now thriving and have never had an extended hospital stay.

The scholarship is offered by Canticle Ministries, a non-profit ministry run by the Wheaton Franciscan system that serves youths and adults with HIV and AIDS. Most of the applicants are in the adolescent HIV program at Children's Memorial Hospital, where doctors, nurses and social workers helped Canticle develop its concept. They've watched these youths grow up, defying nearly everyone's predictions for shortened life expectancies.

"Before I worked with these kids, I would have thought they were all on death's door," said Dr. Robert Garofalo, director of Children's adolescent HIV program. "But I've learned a tremendous amount about the human spirit from them."

Among this "forgotten population" are stories of resilience and courage. Not only do they have the constant fear of dying, but many youths also have watched their parents, family members and friends die of AIDS. Dozens are orphans who've bounced around in foster care and group homes, and state support will disappear when they turn 18.

Brad Ogilvie, director of Canticle Ministries, who is also HIV-positive, worries the lack of support could put the youths at risk for homelessness and drug addiction. This spring, he will distribute the first scholarships of up to $3,000 a year. Recognizing that many of these teens worry about the stigma attached to HIV, he will protect the anonymity of the recipients, most of whom have told no one outside of their family that they have the virus.

"What if we lived in a world that did not assume these kids would die from the disease that killed their parents but instead showered them with acceptance, love and hope?" Ogilvie asked.

Hope is exactly what the 16-year-old Northwest Side girl says she counts on.

Each day, she deals in uncertainties. Will this new medicine work better, make her less nauseated, help her get through more days? Plus, there's the nagging worries about Mom, who also has HIV and suffers from depression.

At school, she's heard kids casually refer to people with AIDS as freaks. Others tell classmates jokingly: "Get away from me. You have AIDS." The comments may seem innocuous, but for her, they confirm that she needs to keep her secret. Like everyone interviewed, she asks not to be identified.

"People talk about it; they joke around a lot," she said. "But they don't understand that joke is affecting me."

She withdraws from many normal teenage activities, such as sleepovers with friends out of fear that someone will figure out what all her medications are for. She takes seven at night, six in the morning.

Recently, the girl's T-cell counts--measuring the strength of her immune system--have fallen, raising concerns she may soon develop full-blown AIDS. "It makes me think more," she says, "about dying and stuff."

Even with those concerns, this girl sees herself achieving whatever she sets her mind to do. Dependent on public aid, she counts on a scholarship to get her there.

At school, she's active in student government and a special math and science program. She plays volleyball for a community group and mentors younger kids with HIV.

"A lot of people in my family didn't go to college or even graduate from high school," she said. "I want to be one of the ones who do. It's just the next step in becoming what you want to be."

Social workers at Children's are using the scholarship as a way to encourage more adolescent patients to think about their future. They're beginning to discuss the scholarship with all teens who might be eligible in the next few years.

"These kids have had so much loss. Even if the prognosis was good for their health, it's always questionable whether they would actually survive because they've sometimes lost both parents and been orphaned at an early age," said Erin Leonard, a Children's social worker. "This is a gift that we can offer these kids because it means they're alive and they're healthy enough to think about their futures."

Like Leonard, Garofalo has been amazed by the number of patients who persevere despite the most difficult situations. Many live in extreme poverty, suffer from depression and have been rejected by foster parents.

One 14-year-old girl lost her 10-year-old sister to AIDS a year ago. The girl's mother, who gave birth to four babies inside a jail, died when the girl was a toddler.

The final blow came after the girl's sister's death, when the woman who adopted her said she didn't want to keep her anymore. She's now in a new foster home in the south suburbs.

Although she suffers from depression, she's in good health.

Then there's the varsity basketball player who looks like an Abercrombie & Fitch model. He's already lost his father to AIDS. Still, he plays on a varsity basketball team for a Northwest Side Chicago public school, is doing well on medications and plans to apply for the Canticle scholarship.

There's another young girl, once near death, who has completely bounced back after getting on a regular medication regimen. Another young girl, adopted by a Wilmette couple, is thriving, visiting Paris with her parents and living a relatively normal teenage life.

Of the roughly 50 adolescents with HIV or AIDS in the Children's program, none has died since Garofalo arrived 18 months ago. But, Garofalo says, there are five or six "time bombs" with full-blown AIDS. Another 10 or 15 have severely troubled immune systems. The remainder, Garofalo says, are in good health.

"I absolutely tell them they should be planning for their futures, including going to school and getting jobs," he says. "We have to change mindsets because they can do so well."

Still, many of the patients have been a continual challenge for the Children's team, and social workers meet with them regularly. Their oldest living patient, a 22-year-old man who acquired HIV from his mother at birth, is a prime example.

For much of the time, he refused to take medications, feeling he could somehow beat HIV with positive thinking.

For now, his doctors say, his luck has held out. But after years of refusing medications, he has full-blown AIDS. Recently, he was hospitalized with severe pneumonia, which frightened him so much he's pledging to stay on his medications.

Despite the recent illnesses, he, too, has hope. He's thinking about applying for the college scholarship and wants to work with children, maybe as a male nurse or a child psychologist.

From his hospital bed, he is introspective and positive. In his Bulls T-shirt and black cap, he looks out on the city's skyline and allows himself to dream. A college scholarship, he says, will give other youths with HIV and AIDS new reasons to live.

"The things you experience in life make you the person that you are," he said. "People in this situation just have to grow up a little sooner."

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