Soccer Stories: Tony

soccer_river valley

Tony is 12, and soccer (football) is his favorite thing in the world.  He has been infected with HIV his entire life, and has been taking 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 when I was playing for hours every day.  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, HIV started to weaken Tony's body. He developed a terrible pneumonia and had to be admitted to the hospital a few months ago.

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We really thought Tony might do better with his medicines -- and stay stronger -- if he knew why he was taking them. Our team in the clinic worked with his one living parent to tell Tony that he was infected with 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 disease.

As part of my research study figuring out how to disclose HIV status to children, we offer counseling for families and for children like Tony. We 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 also offer support groups for adolescents once they know their status so that they have a place for ongoing support and discussion.

Tomorow, we are having a special discussion group with adolescents who have taken part in these groups so that my team can learn from the kids what types of resources and group activities would make the groups even better. We were supposed to meet in the clinic, but our compound is going to be on lockdown because of a planned protest in town that could become messy. But our kids were so eager to share that we didn't want to cancel the group. Instead, they are going to come to our house and share their stories in the living room! Excited to host them -- and hoping, of course, for peace and safety in town.

Our young football player, Tony, has benefited a lot from one of these groups. We want to make the groups available for more and more kids like Tony:

My counselor was saying there were other kids coming to the clinic like me.  There are times when they talk together at the clinic.  I go [to the group] 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.

Posted at 07:41

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