JOHANNESBURG, South Africa — Nkosi Johnson, a boy who was born with HIV and became an outspoken champion of others infected with the AIDS virus, died Friday of the disease he battled for all 12 of his years.
Nkosi was praised for his openness about his infection in a country where people suspected of carrying the AIDS virus often are shunned by their families and chased from their communities. Former South African President Nelson Mandela called him an “icon of the struggle for life.”
“Children, such as Nkosi Johnson, should be enjoying a life filled with joy and laughter and happiness,” Mandela said in a recent statement. “On a frightening scale, HIV/AIDS is replacing that joy, laughter and happiness with paralyzing pain and trauma.”
Nkosi collapsed in December with brain damage and viral infections, and had not been expected to live much longer. His foster mother, Gail Johnson, said he died peacefully in his sleep in the morning.
During his short life, Nkosi successfully contested the policies that kept HIV-infected children out of public schools. He talked about his own infection, challenging people to re-examine their fear of those afflicted with AIDS.
“He had an awareness of the threat to his life and the importance of his life in lessening the threat to other people with AIDS,” High Court Justice Edwin Cameron, who is also infected with the virus, said recently. Nkosi was “a person with maturity far beyond his years, with the wisdom and courage of many adults accumulated together,” Cameron said.
Nkosi was born Feb. 4, 1989, with the virus that causes AIDS. His mother could not afford to bring him up, and Gail Johnson became his foster mother when he was 2. Nkosi’s mother died of AIDS-related diseases in 1997.
That same year, Gail Johnson and Nkosi successfully battled to force a public primary school to admit him despite his infection. The fight led to a policy forbidding schools from discriminating against HIV-positive children, and to guidelines for how schools should treat infected pupils. About 200 HIV-positive children are born in South Africa each day, but most die before they reach school age.
Nkosi became internationally known with a speech at the opening of the 13th International AIDS conference last July in Durban, South Africa, in which he asked that AIDS sufferers no longer be stigmatized.
Nkosi helped raise money for Nkosi’s Haven, a Johannesburg shelter for HIV-positive women and their children. He was crushed when a 3-month old baby his foster mother cared for died of AIDS.
“He hated seeing sick babies and sick children,” Johnson said.
The experience led to his speech at the AIDS conference, where he urged the South African government to start providing HIV-positive pregnant women with drugs to reduce the risk of transmission of the virus during childbirth.
A year later the government is still studying proposals to use the drugs.
”(Nkosi) was a symbol of resistance in a different sort of way, and I hope that this is now a lesson for us as government to do our best to deal with this AIDS scourge,” Winnie Madikizela-Mandela, a member of parliament and head of the ruling African National Congress’ women’s league, told 702 talk radio.