Today, I'm trying to finish hiring a team to help Tony get back
to playing soccer.
Tony is 12, and soccer (football) is his favorite thing in the
world. He has been infected with HIV his entire life, and he
has had to take medicines for HIV over the last 4 years. The soccer
sometimes causes problems with taking his medicines:
"I was so bad with my
meds. I just didn't remember. It's hard to remember
when you are playing football like I am. I love
football. I would miss meds because of not remembering.
I wasn't trying to skip. Sometimes my older sisters would try
to remind me, but the way they tell me is not good. I don't
want to do what they say."
Because he missed too many of his medicines, the HIV started to
weaken his body, and he got sick enough with a pneumonia that he
had to be admitted to the hospital a few months ago.
We decided that it was time to tell Tony that he had HIV; we
hoped that he might take his medicines better - and stay stronger -
if he knew that he had HIV. This was a slow process for Tony.
At first, he did not want to believe that he had HIV.
"When I got back from the
hospital, I just wanted to say, "That never happened. I don't have
the disease." I was feeling better and thought it was some
mistake. I think I was in some big shock. I wasn't listening. I
started to get sick again. I wasn't playing football much and the
kids were saying I was too weak for it. They started talking
about me. I didn't like the meds but I started hating being sick. I
wanted to forget I had HIV, but some of the kids were guessing and
calling me names. They said I couldn't play on their football team
anymore. They make it hard for me to forget about this
As part of my research study figuring out how to disclose HIV
status to children, today I'll complete the hiring of a team that
will offer counseling for families and for children like Tony. We
spend all of next week beginning their specialized training. We'll
have a curriculum and special materials to guide families through
this process of talking with children about HIV and helping
children accept their diagnosis. We'll have support groups of
adolescents that will offer ongoing support and discussion.
Tony has benefited from counseling and from one of these groups,
and we want to make the groups available for more kids like
"She was saying there were other
kids coming to the clinic like me. There are times when they
talk together at the clinic. I go and listen. It helps
me to remember that I am not the only one and we learn how to
accept this disease. It is still a bit hard, but I don't skip
meds. I don't want to get sick again."
Most of all, I hope we will make it possible for kids like Tony
to get back to doing what they love best - playing, being with
friends, going to school, and growing into confident adults who can
take care of themselves.