J O H A N N E S B U R G, South Africa, June 1, 2001 -- Nkosi Johnson, a boy born with HIV who became an outspoken champion of others infected with the AIDS virus, died today of the disease he battled for all 12 of his years.
His foster mother, Gail Johnson, said he died peacefully in his sleep early this morning.
Nkosi collapsed in December with AIDS-related brain damage and viral infections. He was not expected to live much longer.
On Thursday, Nkosi lay bedridden in a semi-comatose state, horribly emaciated and reduced almost to a skeleton. A feeding tube protruded from his nose. Gail Johnson said he had been unable to eat solid food since last year and had been suffering seizures.
In a recent statement, former President Nelson Mandela called Nkosi an "icon of the struggle for life."
"Children, such as Nkosi Johnson, should be enjoying a life filled with joy and laughter and happiness," said Mandela. "On a frightening scale, HIV/AIDS is replacing that joy, laughter and happiness with paralyzing pain and trauma."
Praised for His Openness About AIDS
Nkosi had been 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.
"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," said High Court Justice Edwin Cameron, who is also infected with the virus.
During his short life, Nkosi successfully contested and changed the policies that kept HIV-infected children out of public schools. With remarkable openness he talked about his own infection, challenging people to re-examine their fear of those afflicted with AIDS.
Nkosi was "a person with maturity far beyond his years, with the wisdom and courage of many adults accumulated together," Cameron said recently.
Hated Seeing Sick Babies, Children
Nkosi rose to international fame when in a speech at the opening of the 13th International AIDS conference last July in Durban he asked that AIDS sufferers no longer be stigmatized.
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.
Johnson said Nkosi had a warm sense of humor. He would often try to get out of his household chores, such as feeding the family's five cats. Toward the end of his life, when he was too ill to perform such tasks, he told Johnson he was sorry for letting her down.
In 1997, the two 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 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.
‘A Symbol of Resistance’
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.
Nkosi became seriously ill in late December and he suffered brain damage that left him unable to eat and speak. As he lay dying in his home, a stream of visitors stopped by to pay their respects.
Some South Africans have questioned whether Nkosi's spot in the limelight robbed him of his childhood.
But Cameron, the high court justice, said Nkosi enjoyed his public role and did only what he wanted to do.
Nkosi helped raise money for Nkosi's Haven, a Johannesburg shelter for HIV-positive women and their children. He wanted to be remembered as someone who helped remove the stigma surrounding AIDS, Johnson said. Nkosi's birth uncle, Fika Mbambo, said Nkosi succeeded in doing that, and in making people less reluctant to reveal their HIV-status.
"I think he has done a lot for AIDS," Mbambo said. "He was a brave man. He was very strong. He never complained."