Jesus, 12, believed the pills he swallowed every morning and
night were vitamins until his mother sat him down on the couch a
year ago.
She began to cry.
“She told me I had a sickness called HIV,” Jesus said. “I was 11.
I never knew.”
His mother transmitted HIV to her son during pregnancy, not
knowing she was infected. In the U.S., without antiretroviral
treatment, approximately 25 percent of pregnant women infected
with HIV will pass the virus to their baby, according to the
Centers for Disease Control and Prevention.
Jesus found out the pills were medicine that allow him to feel
healthy and normal by holding the virus at bay.
Now, every week, he attends a support group at AIDS Services
Foundation in Irvine for 20 children and teens living with
HIV/AIDS. Some participants like Jesus, have HIV. Others have
parents or siblings with the disease. All have a secret to keep.
The Register is not publishing their full names to protect their
privacy. Because of the stigma, their closest friends, teachers,
and even some relatives don’t know they have HIV.
That creates some uncomfortable situations whether it’s listening
to presentations on avoiding HIV during health class or
overhearing taunts made by classmates.
Jesus recalled a boy at school who insulted another boy by
telling him he caught AIDS from having sex with a dog.
“I try to blend in,” he said. “I kind of laugh. On the inside,
it’s hurting a lot.”
At last week’s meeting, Jesus smiled proudly after fashioning a
marionette puppet out of foam with a hat made from a snow cone
cup and a wine cork nose. The six-week workshop, taught by
puppeteer Ellen Schulze, was put on by the Segerstrom Center for
the Arts.
While any kind of art can be therapeutic, the puppets may serve a
special role in helping express complex emotions.
“Often people will feel the puppet can express and say things
that they can’t,” said Krista Ratnaweera, manager of community
partnerships for the Segerstrom Center. “The puppet can help
voice things that they’re struggling to talk about.”
Laurie Barber, family programs coordinator and leader of the
support group, said she plans to incorporate the puppets into
future sessions. The meetings offer social time, snacks and dodge
ball, as well as smaller groups for age-appropriate HIV
education. Barber said any question a participant asks will be
answered honestly.
“Any other illness or disease, kids could share about and it
would be accepted,” Barber said. “There’s nowhere else they can
talk about it. There’s not a lot of open dialogue in the family
often times.”
In Orange County, the most current data indicates 43 diagnosed
cases among children under age 18, which represents less than 1
percent of the infected population.
Liz, 18, grew up hearing different stories about why her mother
died. Heart failure. A drug overdose.
Liz was told she had to take medicine because she was sick, but
she felt fine and didn’t understand why. When she was 14, at the
request of a relative, Liz’s doctor told her she had HIV. She
found out her mother had died of AIDS and she was born with HIV.
“I started crying,” she said. “I freaked out. ‘Oh my God I’m
going to die.’ ”
She doesn’t remember asking any questions.
But once she started attending the support group, she realized
that she wasn’t dying and she could live a normal life.
“My doctor said I’m very healthy,” Liz said. “I want to get
married and have children and see them grow up and have
grandchildren.”
Liz has dated during high school but has not had sex. She gets
frustrated by the “negative, rude, immature” comments she hears
about AIDS and the assumption that it’s a gay disease.
“There are things people say that get to me,” Liz said.
Carolina, 10, attends the group with her older sister. Her sister
has HIV, Carolina does not.
