Pediatric AIDS program offers carefree day
It’s a disease that causes confusion, speculation and fear. And for a child with HIV or AIDS, normalcy is usually just out of reach.
For one day every summer, though, roughly 40 families facing the diagnosis have a chance to enjoy life, and the children have a chance to be regular kids — thanks to the pediatric AIDS program, a Children’s Miracle Network-funded initiative.
Featuring a day of food, fun and activities at an amusement park, the program gives the children, their siblings and their parents a chance to meet others in the same medical situation. They also can talk about the problems they face and how they cope, all in a normal — but closed — environment.
Advancements in treatment of the disease, including maintenance medications, can help HIV-positive children live long and healthy lives, explains Janet Weis Children’s Hospital Chairman Dr. Michael Ryan, a pediatric infectious disease specialist who coordinates the program. Community reactions, however, often leave families feeling shunned and alone.
“Despite the advancements in treatment since 1996, we’re no better today as far as public acceptance goes,” Dr. Ryan says. “This program gives the families a chance to discuss what’s going on without concern of being judged or feared like they might be in their everyday lives.”
Almost all of the patients Dr. Ryan treats for HIV/AIDS attend the event, he says, and they look forward to it and ask about it all year.
“I’m there, too, grilling hot dogs and being part of the activities,” he says. “That gives them a chance to see me as a person, not just a doctor, and I can see them as more than just patients.”