Joey: United States
January 22, 2009
Joey. (Photo: EGPAF)
As an EGPAF Ambassador, Joey advocates for children and families living with HIV. He also started his own organization (the Joey DiPaolo AIDS Foundation) to support HIV-positive children. Joey lives in New York with his wife, Christina.
I used to think I wouldn't be alive today. When I was four years old, I received contaminated blood during open-heart surgery. Four years later, I learned I was HIV-positive. I overheard my doctor talking to my parents about the disease. They advised my parents to keep the diagnosis a secret.
I didn’t tell my parents I knew I was infected for two years, until I began participating in the National Institutes of Health clinical trials. My mother learned about me knowing from the staff and parents of other children participating in the study. She sat me down so we could have our first conversation about the disease.
When I was 10, I suddenly became seriously ill. I came down with a 106-degree fever, developed septic shock, and my kidneys shut down. My family was told by my doctors that I had 48 hours to live. Even if I managed to survive, doctors were sure I would need to have my legs and arms amputated and that I would very likely end up brain damaged.
Fortunately, the doctors were wrong.
I was in recovery watching a special about Ryan White when I decided I wanted to continue his work educating children about this disease and teaching them how to prevent becoming infected.
I went public with my illness. This was at a time when children with HIV/AIDS were often highly stigmatized, and I was no exception. I was excluded by friends in junior high, and my community actively protested against my attendance at school.
But I didn’t give up. In fact, I started speaking more—and at a national level. I addressed more than 20,000 people in New York City’s Times Square. The rally coincided with the Democratic National Convention.
On World AIDS Day in 1992 I read out the names of those who have passed away from AIDS. Thats where I got to meet Elizabeth Glaser for the first time. Elizabeth addressed the nation about her own AIDS struggle that day as well. We immediately became friends.
On that same day, an HBO movie about my life, The Joey DiPaolo Story, aired nationwide.
Today, I'm healthy and committed to helping other children with HIV/AIDS. We've made tremendous progress, but there are still too many children around the world affected by HIV/AIDS. And they need our help. By continuing to speak out, we can create a voice for these children and their families, and one day eliminate pediatric AIDS.