Nkosi’s Legacy

It’s almost impossible to talk about HIV/AIDS in South Africa without Nkosi Johnson’s name coming up.

Like one in every three babies born in South Africa today, Nkosi was born HIV-positive. Unlike most, Nkosi lived just over 12 years; most die before their second birthday. In his short life, he lost his mother to AIDS, was adopted by a foster mother, and attended elementary school after enduring initial opposition to his HIV-positive status.

In July 2000, Nkosi addressed the 13th International AIDS Conference in Durban, South Africa, where he told the delegates, “I hate having AIDS, because I get very sick, and I get very sad when I think of all the other children and babies that are sick with AIDS.”

Nkosi died in June 2001. Four months later, John Meakin and Robyn Page spoke with his foster mother, Gail Johnson, in Johannesburg, South Africa.


JMNkosi said, during his amazing speech at the AIDS conference, that he hoped there would be more Nkosi’s Havens to care for mothers and babies. Is that hope slowly being realized?

GJRather quickly! The project is running away with me. The house next door [to Nkosi’s Haven] has been bought for us by Nashua, a large office equipment company here. They have set the pace; hopefully, other corporations will come in now. We are educating, feeding and accommodating eight AIDS orphans in Tembisa township. We have just bought a farm, and 50 percent of that is being dedicated to farming. We’ll have residential care there in cottages. And we have just put in an offer for property in Alan Manor [near Johannesburg], which will be cottages, flats and a huge mansion of a house. Again, this will be residential care, and it will have hospice facilities in the main house.

JMNkosi had high hopes and big goals?

GJOh, yes. While he could still talk, I said to him, “Come, let’s work out what you are going to do next year. What do you want to happen, sweetheart?” So he said, “Mommy, I want us to be looking after 15,000 mommies and babies.” I said, “What?”

JMHow many mothers and babies are you caring for now?

GJI’m caring for 54.

JMHow would you describe Nkosi’s legacy?

GJHeightening awareness, very definitely; giving AIDS a face, in South Africa particularly. We needed it badly, and we still need it, actually.

People are also talking about “the Nkosi Johnson method of caring” that’s been used in the Department of Health, for example. Nkosi was not put onto antiretroviral treatment until June last year. But he had three balanced meals a day; he had regular medication, although it was the Bactrims of the world [antibiotics to treat the opportunistic infections resulting from HIV infection]. He had acceptance; he had normality.

RPIt’s been a few months since Nkosi died. How are you coping?

GJA lot of my mourning, if I can say that, happened when Nkosi stopped speaking, because I never, ever thought he was going to be affected neurologically. I always thought he was going to die wasting away, or from problems with his lungs. So when he stopped talking, that’s when I started missing him. But I haven’t had time.