Every night, without fail, at 8pm Nonhlanhla Mazaleni dials into a group phone call with dozens of adolescents and young adults living with HIV to ensure they adhere to their ARV treatment.

Nonhlanhla, 49, founded Tholulwazi Phakathi, an NPO run from her modest home in Diepkloof, five years ago to focus on HIV education, psychosocial counselling, and promoting ARV treatment adherence in fun and interesting ways.

“This has changed my life so much. I feel needed and I feel like I can help people,” Nonhlanhla says, sitting in her lounge that doubles as her office and workspace.

The direction of Nonhlanhla’s life changed when her younger sister fell ill with HIV. She watched helplessly as her sister became sicker and eventually died because of HIV/Aids-related complications.

“We were very close. We shared everything. We shared clothes, we shared food, we shared everything,” she says. “And then I watched her die. I couldn’t do anything for her and I would say a part of me died that day when she died.”

“This happened at a time that there was a lot of denialism around HIV and Aids. Treatment was very expensive and we could only find it in private healthcare and we couldn’t afford that because we were living in poverty. We just didn’t have money,” Nonhlanhla says.

“It was terrible, really, really terrible to watch her die like that. Just lying there, skin and bones. It was too scary.”

Her sister left behind an HIV-positive toddler that Nonhlanhla has since raised as her own daughter. But to ensure that the child had a better future and life than her mother, Nonhlanhla decided to dedicate her life to helping people with HIV and Aids.

Family deeply impacted by Aids

For years she worked in a research clinic in Soweto improving her knowledge about the illness. “I decided to get some training and went back to school. I did a basic nursing qualification and then from there, I did a lot of training on HIV. I just wanted to look after my sister’s child so that she can be well and healthy.

“Maybe two, three years later, my father started getting sick. And then we took him to the hospital and we found out he was HIV positive. So was my mother, and then I also lost two of my other siblings through Aids. So everybody in my family was dying of HIV. So the only people that I could help were my parents. They’re still alive to this day,” Nonhlanhla says.

These experiences pushed her into finally establishing Tholulwazi Phakathi. The NPO, which for the majority of its existence has been self-funded by Nonhlanhla, offers a number of different programmes including group calls and adherence camps.

Youth education camps

Nonhlanhla created her own literature to use to educate children and adolescents about HIV as well as helping with disclosure of the illness to children who weren’t aware of their status.

“I know that I’m a good storyteller. So when you work with kids, they need to hear a story about something to know and understand it. So I will make these stories in my room and these stories have all made it into the literature that we now use for education and training.”

Nonhlanhla is currently trying to raise funds for the next adherence camp for about 150 young people between the ages of 12 and 24. “We don’t charge them anything for the camp, we only charge transport money,” she says.

“At these camps, the children and young people will share their stories and learn from each other. We will teach them why it is important to adhere to their treatment and that you can live a normal life despite the illness. It is also important to remind them that adherence to their medication means the virus is suppressed and cannot be passed on to others. Undetectable equals untransmittable,” she says.

Even through so much trauma and loss, Nonhlanhla stays positive and motivated by the memory of her sister and the knowledge that she could not do anything then, but is helping dozens of young people now. DM

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