Purse's proposed learning center would not replace school but would supplement it. Each child, Purse said, would have an individual educational plan for learning disability and a special educational teacher would be assigned to each child. Purse also wants the center to provide AIDS education, give children a place to discuss their illness, learn more about AIDS and above all, be a refuge for them and perhaps their family members as they try to live with the disease.
"What the learning center would enable them to do is play catch up, give them a support system for what they're dealing with at home," Purse said. "A lot of the time, when children live with their families or go home to their families, the families are totally dysfunctional. … It would give them a safe place to be."
The center would also provide counselors for teenagers who did not have learning disabilities that would prevent them from going to college, and they would help them find grant and scholarship opportunities. Purse's center is in its very beginning stage as she is looking for sponsorship and funding. She says New York's Jewish Board of Family and Children's Services has shown early interest in her project.
Purse is also a "Big Sister" to a 16-year-old girl she first met at ICC and she wishes a center existed for her. Her "little sister" lives with her mother, who is also HIV-positive and often hospitalized. Purse sighs as she worries about the girl, who must often take on the responsibilities of an adult and has been known to refuse to take her medication to the point where her doctors had to perform an intervention.
"She has a T-cell count of 10," said Purse. "It's like living with a time bomb. If she gets a cold, she could get pneumonia."
Teens who have untreated mental illness tend to have more difficulty taking medication. Experts say refusal to take medication can represent the rebellion and growing pains adolescents undergo as they seek their independence. It can also reflect their desire to feel normal, and depression over their illness, especially if they have watched their parents die while on medication.
"With some of our perinatally born clients, those who have grown up with the disease, a lot of the perception of the medicine came from the early part of time when patients used AZT (zidovudine) just before they died," said Dr. Donna Futterman, pediatrician and director of the Adolescent Aids Program at Montefiore Medical Center in the Bronx. "If one of your parents die while on medication, you lose a lot of hope. 'My mother died, why am I going to live?'"
In some ways, these teens have been robbed of their childhood because they were born with a disease and have had to tackle circumstances that many adults could not handle.Some take several doses of powerful medication a day that doesn't make them feel well. They must grow up fast and learn to confront their own mortality — as well as their parents' fatal illnesses.
These teenagers can feel isolated and it is important for them to have a strong network of support — friends, relatives, mentors, support groups who can give them a sense of hope and show that they can lead productive lives.