When I was born on August 9, 1979, my mother thought that the laborious delivery of her 10-pound baby girl would be the worst of her problems. Little did she know that I had much more in store for her. I was born with a complicated heart defect. This was corrected by an open-heart surgery at age 3.
As my family celebrated the success of my surgeries with pool parties and roller skating parties galore, we were unaware of what was to come years down the road. When I was 8 years old, the medical world discovered that horrible mistakes were unknowingly made in the past when unscreened blood products were used in blood transfusions.
My family brought me in for the "routine" test to make sure that I wasn't one of the unlucky few who received infected blood. This test turned out to be not so routine, and my family was informed that I was HIV-positive. The doctor very nonchalantly told my parents that I had two years to live. That was it. My parents knew that I had always been a strong and healthy kid, but at that time, no one ever lived with HIV. Having just been given a death sentence for their youngest child, my parents put on brave faces and spoiled me rotten. I was oblivious to what was occurring, but I sure was loving the attention.
Two years later, at age 10, the tides turned and my parents finally got some good news. The National Institutes of Health (NIH) had approved drug protocols for pediatric patients with HIV. It was a taste of optimism in a world in which we were famished for hope and starved for options. Given that I finally had a fighting chance, my parents informed me of my HIV-positive status so that I would understand why I was going to a different hospital, undergoing strange tests, and taking new medications.
Today, I am 35 years old. I'm not only LIVING with HIV, but I'm THRIVING. I have continued participating in drug protocols at NIH over the years and have been blessed to live in a world of options. I remained a healthy child, but at times, I needed to change medications and thankfully, the research had been done and I had new, pediatric-approved drugs available. Like train tracks laid out before me, keeping me on track, the research had given me options and hope. Had those new drugs not been available to me over the years, I might not be here today.
What’s more, I’m a healthy young adult. I am here because of well-timed research. This research has created a world of hope in the United States. The work of brilliant researchers and scientists has allowed me to be thankful and hopeful. I'm thankful that I had and will have the medical resources that I need to stay healthy.
I'm thankful that I had the strength of a loving family and the support of a caring medical community. I'm thankful my doctors have the information they need to take care of me – a woman living with HIV. I’d like to thank the Foundation for helping to give people like me a chance at life. Elizabeth Glaser – another woman who lived with HIV – fought to give children access to the life-saving medications that I received as a child. I'm hopeful that I'll always stay healthy. And I'm hopeful that people in our country and all over the world will have the same life-saving resources that I did to thrive in this world, living with HIV.
Jamie currently works as a child life specialist for a children's hospital. She is also a passionate advocate for children and families living with HIV/AIDS.