Nkosi Johnson; South African Boy Sought Greater AIDS Awareness

Child activist Nkosi Johnson, an outspoken advocate for greater AIDS awareness and an inspiration to millions of South Africans, died Friday of complications from the disease. He was 12.

Nkosi was considered by many an ambassador for children born HIV-positive and was admired for his openness about his infection in a country where admitting to carrying the disease is still taboo.

Initially given nine months to live when his foster mother, Gail Johnson, took him in at age 2, Nkosi was labeled as the country’s longest surviving child AIDS carrier five years later.

He collapsed in December with brain damage and viral infection. His foster mother brought him home in January after doctors said they could do nothing more.

A torturous struggle followed. By the end, he lay bedridden in a comatose state, his emaciated body weighing just 22 pounds.

Admirers said Nkosi’s valor in the face of great suffering was an inspiration to many of South Africa’s 4.7 million people who are living with the human immunodeficiency virus, which causes AIDS.

“It’s a great pity that this young man departed,” former President Nelson Mandela told reporters. “He was exemplary in showing how one should handle a disease of this nature. He was very bold about it, and he touched many hearts.”

“He has probably done more than any other individual to raise the lid on South Africa’s hidden shame,” said Kobus Gous, the opposition Democratic Alliance’s spokesman on AIDS.

An emotional Johnson said that her son’s death did not come as shock.

“For the last three weeks, his seizures had been coming very quickly,” said Johnson, who looked after the boy at their home in Melville, a trendy Johannesburg suburb. “Last night, he didn’t look good. He was in a constant twitch. He seemed to be experiencing more and more pain.”

Johnson gave the youngster a dose of morphine to ease the suffering. “Then in the morning, he just went peacefully,” she said.

During his short life, Nkosi and Johnson forced a primary school to admit him despite his infection. Their effort led to a policy forbidding schools to discriminate against HIV-positive children, and to the introduction of guidelines for how schools should treat infected students.

Nearly 200 children are born HIV-positive in South Africa each day. Most develop AIDS and die before they reach school age. The disease is expected to kill an estimated 6 million South Africans in the next decade.

Shortly before Nkosi’s death, his headmaster told reporters that most of the students at his school did not know the boy had AIDS. They would just play together as children do, he said.

“Nkosi definitely gave HIV a human, compassionate side, which is often missing in all the issues and the politics surrounding the disease, especially in South Africa,” said Clive Evian, a medical doctor and director of AIDS Management and Support, a public health consultant group. “I think the whole country will mourn a little bit for him.”

Nkosi gained international recognition and stole the hearts of millions last year at the 13th International AIDS Conference in the South African city of Durban, where he urged the national government to start providing HIV-positive pregnant women with drugs to reduce the risk of transmission of the virus during childbirth.

“We are normal human beings; we can walk and talk,” Nkosi had told a packed audience, including South African President Thabo Mbeki. “You can’t get AIDS by hugging, kissing and holding hands.”

The government has come under fire for being slow to react to the pandemic and blocking the distribution of anti-retroviral drugs. But state officials recently said that pregnant women would soon be treated with such medicines.

Mbeki has also been criticized for questioning the link between HIV and AIDS.

“Nkosi is a reminder to us that there are approximately 60,000 children born every year with HIV infection,” said Nathan Geffen, a spokesman for the Treatment Action Campaign, an anti-AIDS drugs lobby group. “And a large number of them could be prevented if only the government didn’t lack the political will to implement the necessary mother-to-child HIV-transmission-prevention program.”

In April, the world’s biggest pharmaceutical companies dropped a controversial lawsuit against the South African government, paving the way for the country to provide cheaper versions of anti-AIDS medication. But the state has still to take advantage of the opportunity.

Born Xolani Nkosi on Feb. 4, 1989, his mother, Daphne, could not afford to raise him. She died of AIDS-related diseases in 1997.

Johnson, who also runs Nkosi’s Haven, a Johannesburg center for HIV-positive women and their children, became his guardian.

Last year, Nkosi started on a “triple cocktail” therapy in an attempt to prolong his life. But his mother and others said the treatment started too late to have a real impact.

Tributes streamed in Friday and well-wishers dropped by the family home to pay their respects to a youngster many considered a hero in the battle for life.

But in the end, said Johnson, Nkosi was simply a typical little boy--sometimes a nuisance who “drove me nuts,” but loving and caring.

“He was a very special little boy, a mature little boy, an affectionate little boy,” Johnson said.

A memorial service will be held for Nkosi next week. His funeral will be June 9.