Nkosi Johnson

Icon of the struggle for life

(February 4, 1989 to June 1, 2001)

Nkosi Johnson. Photo courtesy beholders.org

Some people achieve a great deal in a short life time. This is true for Nkosi Johnson, who died at the age of 12. At the time, he was the longest-surviving HIV-positive child born with the virus. The youngster found purpose and gained international respect as a brave spokesperson for people living with HIV/AIDS.

Xolani Nkosi was born in a township east of Johannesburg on February 4, 1989. He was adopted by Johannesburg public relations consultant Gail Johnson when his mother, Nonthlanthla Daphne Nkosi, could no longer care for him as a result of AIDS-related illness.

In 1997, a primary school in the Johannesburg suburb of Melville denied the little boy access due to his HIV status. The South African Constitution prohibits exclusion and discrimination on the grounds of medical conditions and an uproar ensued in the highest political echelons, resulting in Johnson’s admittance to the school. Treatment and medication allowed the little boy to live as normal a life as possible.

In July 2000, the 13th International AIDS Conference took place in Durban. Johnson was a keynote speaker, whose outspoken activism served as a powerful reminder that much still needed to be done to destroy the stigma, discrimination and prejudice surrounding the disease.

Johnson called on government to adopt a proactive approach to treatment: “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 [the antiretroviral azidothymidine]to pregnant HIV mothers to help stop the virus being passed on to their babies. Babies are dying very quickly ...

“I want people to understand about AIDS – to be careful and respect AIDS – you can’t get AIDS if you touch, hug, kiss, 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!"

Johnson died on June 1, 2001 – on International Children’s Day. The people of South Africa and the world grieved his loss.  His memory lives on in the establishment of Nkosi’s Haven, a Johannesburg shelter for destitute HIV-positive mothers and their children that was founded by Johnson and his mother, Gail. In November 2005, Johnson was posthumously awarded the International Children’s Peace Prize. The $100 000 prize money from the KidsRights Foundation was donated to Nkosi’s Haven, where the boy’s memory lives on in love and gratitude.