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AIDS HERO:
NKOSI JOHNSON
by MY HERO


He was born Xolani Nkosi in a township east of Johannesburg. He never knew his father. His mother, Nonthlanthla Daphne Nkosi, was HIV-positive and passed along the virus to her unborn baby. He became a statistic-one of more than 70,000 children born HIV-positive every year in South Africa, where an estimated one-half of the population under the age of 15 will die of AIDS-related causes over the next decade.

But Xolani Nkosi was a fighter. He survived beyond his second birthday, which is unusual in HIV-infected babies. In 1991, Nkosi was admitted to a crowded AIDS care center in Johannesburg after his mother was discharged from a hospital and she was too weak to take care of her son. It was there that Gail Johnson, a volunteer worker, saw the wide-eyed Zulu boy and his ailing mother. She was obviously dying, and he was living on borrowed time. It was a very personal and mutual understanding, says Johnson. "I had had a graphic encounter with an AIDS death close to my family, and I wanted to do something more than just talk about it. And there was Nkosi. All I had to do was to reach out to him."

His mother readily agreed for Johnson to become Nkosi's foster mother. As Nkosi Johnson, he had a home in a neat Johannesburg suburb and a wide circle of friends at Nkosi's Haven, the AIDS care center Johnson founded and named after him. Nonthlanthla Nkosi died of an AIDS-related illness in 1997. In the same year, Gail and Nkosi Johnson won a different battle. When she tried to enroll him in primary school, there was opposition from some parents because of his HIV-positive status. Johnson went public with a complaint and won her case. Nkosi went to school.


That controversy made Nkosi a national figure in the campaign to destigmatize AIDS, and provincial education departments across the country were required to draw up new policies. His big moment came July 2000, when he addressed delegates at the international AIDS conference in Durban (see his speech, below). A tiny figure in a shiny dark suit and sneakers, nervously holding a wireless microphone, Nkosi Johnson, all of 11 years old, held an audience of 10,000 delegates in rapt, occasionally tearful silence as he told the story of his birth and his life. Please help people with AIDS," he said. "Support them, love them, care for them."

Later that year he took the same message to an AIDS conference in Atlanta, Georgia. "It is sad to see so many sick people," he said. "I wish everybody in the world could be well."

Though probably the longest surviving child with AIDS in South Africa, Nkosi was clearly not well when he returned from his U.S. trip in October. He had a quiet Christmas, then he collapsed. Diagnosed with brain damage, he had several seizures and became semi-comatose. Yet he hung on.

"Look at him," Johnson told a local newspaper. "Half the size of bloody nothing and still fighting."

The story of Nkosi Johnson has galvanized AIDS-awareness campaigners. With at least one of every 10 South Africans HIV-positive, the country faces a public health disaster that will hit poor, populous black communities the most. Nkosi once said he wished he were a white person because he never saw a white person get sick. Dr. Zola Skweyiya, Minister for Social Development, warned last year that the AIDS epidemic could result in blacks becoming a minority in their country.

Editorialized in the national Sunday Times: "We South Africans -and all others on this continent and in the world have to learn to acknowledge and treat with humanity those who are living with AIDS. There can be no better monument to Nkosi, the child who has made us confront our frail humanity and our own deepest fears, than this."


For all the misery that Nkosi has had to suffer, he is one of the lucky ones, says Johnson. "He was accepted, he was loved." Among those calling at the Johnson home last week were school friends whose parents once warned them not to get close to him. The children at Nkosi's Haven are also missing the little boy who organized their cops-and-robbers games and always wanted to be the top cop. Contributions to Johnson's AIDS care trust have allowed for the opening of a second Nkosi's Haven in the Johannesburg townships. Johnson hopes there will be many more. Nkosi's name in Zulu it means Lord, or King of Kings will live on.

The following is the speech Nkosi Johnson made for the opening ceremony of the 13th International AIDS Conference in Durban:

"Hi, My name is Nkosi Johnson. I live in Melville, Johannesburg, South Africa. I am 11 years old and I have full-blown AIDS. I was born HIV-positive.

When I was two years old, I was living in a care center for HIV/AIDS-infected people. My mommy was obviously also infected and could not afford to keep me because she was very scared that the community she lived in would find out that we were both infected and chase us away.

I know she loved me very much and would visit me when she could. And then the care center had to close down because they didn't have any funds. So my foster mother, Gail Johnson, who was a director of the care center and had taken me home for weekends, said at a board meeting she would take me home. She took me home with her and I have been living with her for eight years now.

She has taught me all about being infected and how I must be careful with my blood. If I fall and cut myself and bleed, then I must make sure that I cover my own wound and go to an adult to help me clean it and put a plaster on it.

I know that my blood is only dangerous to other people if they also have an open wound and my blood goes into it. That is the only time people need to be careful when touching me.

In 1997, Mommy Gail went to the school, Melpark Primary, and she had to fill in a form for my admission. It said, "Does your child suffer from anything?" So she said yes: AIDS.

Mommy Gail and I have always been open about me having AIDS. And then my Mommy Gail was waiting to hear if I was admitted to school. She phoned the school [officials], who said we will call you and then they had a meeting about me.

Of the parents and the teachers at the meeting, 50 percent said yes and 50 percent said no. And then on the day of my big brother's wedding, the media found out that there was a problem about me going to school. No one seemed to know what to do with me because I am infected. The AIDS workshops were done at the school for parents and teachers to teach them not to be scared of a child with AIDS. I am very proud to say that there is now a policy for all HIV-infected children to be allowed to go into schools and not be discriminated against.

In the same year, just before I started school, my Mommy Daphne died. She went on holiday to Newcastle and she died in her sleep. Mommy Gail got a phone call and I answered. My aunty said, "Please can I speak to Gail?" Mommy Gail told me almost immediately my mommy had died and I burst into tears. My Mommy Gail took me to my mommy's funeral. I saw my mommy in the coffin and I saw her eyes were closed and then I saw them lowering it into the ground and then they covered her up. My granny was very sad that her daughter had died.

Then I saw my father for the first time and I never knew I had a father. He was very upset but I thought to myself, why did he leave my mother and me? And then the other people asked Mommy Gail about my sister and who would look after her. Mommy Gail said to ask the father.

Ever since the funeral, I have been missing my mommy lots and I wish she was with me. But I know she is in heaven. And she is on my shoulder watching over me and in my heart.

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. I just wish that the government can start giving AZT to pregnant HIV mothers to help stop the virus being passed on to their babies. Babies are dying very quickly. I know one little abandoned baby who came to stay with us and his name was Micky. He couldn't breathe, he couldn't eat and he was so sick and Mommy Gail had to phone welfare to have him admitted to a hospital [where] he died. But he was such a cute little baby. I think the government must start doing it because I don't want babies to die.

Because I was separated from my mother at an early age, and because we were both HIV positive, my Mommy Gail and I have always wanted to start a care center for HIV/AIDS mothers and their children. I am very happy and proud to say that the first Nkosi's Haven was opened last year. And we look after 10 mommies and 15 children. My Mommy Gail and I want to open five Nkosi's Havens by the end of next year because I want more infected mothers to stay together with their children. They mustn't be separated from their children, so [here] they can be together and live longer with the love that they need.

When I grow up, I want to lecture to more and more people about AIDS. And if Mommy Gail will let me, [I want to lecture] around the whole country. I want people to understand about AIDS, to be careful and respect AIDS. You can't get AIDS if you touch, hug, kiss, or hold hands with someone who is infected.

Care for us and accept us--we are all human beings.

We are normal. We have hands. We have feet. We can walk, we can talk, we have needs just like everyone else. Don't be afraid of us. We are all the same!"



Written by MY HERO
Last changed on: 7/26/2014 11:02:13 AM

The Nkosi Johnson AIDS Foundation aims to establish care centres for HIV/AIDS mothers and their children (infected or not) to ensure that they are able to live in an environment of acceptance and understanding, and to help them learn to care for themselves and their children.

The Elizabeth Glaser Pediatric AIDS Foundation The Elizabeth Glaser Pediatric AIDS Foundation creates a future that offers hope through pediatric research and programs worldwide to ensure children are at the forefront of every scientific breakthrough.

UNAIDS - Joint United Nations Programme on HIV/AIDS As the main advocate for global action on HIV/AIDS, UNAIDS leads, strengthens and supports an expanded response aimed at preventing the transmission of HIV, reducing the vulnerability of individuals and communities to HIV/AIDS.

Learn about another hero that works with children orphaned by the AIDS crisis--Nathaniel Dunigan
  • Read Kathleen's story on her hero, Nathaniel Dunigan.

  • Watch the MY HERO Project short film, Kay Lord and Her Hero Nathaniel Dunigan, produced by Skip Blumberg.

  • Visit the website of Aidchild, founded by Dunigan. Aidchild's mission statement is: "To provide kids' centres, including: homes, innovative medical care, psychosocial support, and education to orphans living with AIDS who do not have the support of extended families."
Nathaniel with a baby and a visitor (personal photo collection from K. Lord)

Combating AIDS : Communication Strategies in Action
by Arvind Singhal

We Are All the Same: A Story of a Boy''s Courage and a Mother''s Love
by Jim T. Wooten
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