Florence Ngobeni-Allen

Florence and her son Kulani.

Florence Ngobeni

"I can tell you that losing a child to HIV is the worst thing a mother can go through. When I lost Nomthunzi, I cried for a long time. Then I decided to stand up and try to make a difference."

In 1997, Florence lost her five-month-old baby, Nomthunzi, to AIDS. Today, Florence lives in Johannesburg, South Africa, and is the mother of two healthy boys.

June 7, 2011

Losing a child to HIV is the most horrible thing a mother can go through. Almost 15 years ago, I lost my daughter, Nomthunzi, to AIDS. I gave birth in September 1996. My husband suddenly fell ill and died three months later. Nomthunzi had also become ill, and so I took her to Chris Hani Baragwanath hospital in Soweto, South Africa. We were both tested for HIV, and we both tested positive. Nomthunzi fought her illness for several more weeks, but there were no antiretroviral medicines available for children at that time in South Africa.

She passed away in February 1997. She was only five months old. She was the most beautiful girl in the whole world and I will always hold her dear in my life. After I lost Nomthunzi, my life was never the same again. I cried for a long time. I desperately wanted to get out of the house, because being home kept reminding me of my child. That’s when I was offered a job as a counselor at Chris Hani Baragwanath hospital in South Africa.

I remember the first few years working as a counselor. At that time, HIV/AIDS was not a disease that most people in Africa talked about. Many people still didn’t understand it. In many areas, they denied that it even existed. There was no access to HIV prevention programs. No access to medicine, and the voices of people living with HIV were not heard. It was a very difficult time. After I counseled someone who lost a child to HIV, I would just run to the toilet and cry. We were seeing so many lost and it felt like it was only getting worse.

But then, thanks to the work of so many, there was finally a way to stop the transmission of HIV from a mother to her child. And then antiretroviral treatment and PMTCT came to South Africa. There is nothing a mother wouldn’t do to protect her baby. And now that women with HIV knew that there was hope, there was finally a real reason to stand up, fight the terrible stigma, come forward, and be tested.

I found that there were less and less days for me to cry about someone infecting their unborn child. Instead, I would bring smiles by bringing women their child’s HIV-negative diagnosis. Five years ago, I experienced that incredible feeling myself. After watching so many other HIV-positive mothers give birth to healthy, HIV-negative children, I began to think to myself, “What am I waiting for?” I was married again, and for the first time considered it possible for me to have a family. I became pregnant again for the first time since Nomthunzi passed. But this time, I had treatment and access to ARVs to stop the transmission of HIV. My son Alex was born healthy and HIV-negative.

Today he is a healthy, beautiful, growing boy. A few years after Alex was born, I gave birth to a second son, Kulani, who is also HIV-negative. What an incredible gift it is to have a healthy baby, free of HIV. It’s a gift that every mom deserves. And that’s why we have to keep going until we end pediatric AIDS once and for all.

I dream of a generation free of HIV. I know it’s real, because my children are a part of it. And I know that one day soon, we will make it happen.

In addition to her role as an HIV educator, spokesperson, and programs consultant, Florence has come face-to-face with world leaders to advocate for AIDS relief. On World AIDS Day 2011, Florence participated in an event alongside rock musician Bono, singer Alicia Keys, President Barack Obama, and former Presidents George W. Bush and Bill Clinton. She considers it her life’s work to give a voice to the hundreds of thousands of people who, like her, are living with HIV.