Nkosi Johnson - a symbol of the tragedy of Aids

By MARY BRAID

Nkosi Johnson, the 12-year-old South African boy who became an icon by giving Aids a face ­ and a child's voice ­ all over the world, succumbed to the HIV virus in the early hours of yesterday morning.

Nkosi, whose criticism of his government's Aids policy shamed President Thabo Mbeki, died five months after doctors give him weeks to live.

The illness had eaten away at his body and, latterly, attacked his brain, leaving him with grotesquely premature dementia. In the final months, Nkosi was fed through a tube, in a semi-coma, while South Africans, black and white, turned up at his home in a near-permanent vigil.

Nkosi, who was born in a black township, was cared for in the affluent white Johannesburg suburb of Melville by his white adoptive mother, Gail, who took him in when he was two, after his birth mother, Nonhlanla Khumalo, who was also infected with HIV, became too ill to look after him.

Aids is ravaging Africa. One in eight South Africans is infected and 200 children a day are born HIV-positive, most destined to die before they reach school age. Yet Aids does not directly affect the lives of most white families.

Gail Johnson, an eccentric, straight-talking, middle-aged woman with long red hair, chose to make caring for Aids sufferers her life.

Yesterday, as she braved reporters at her relatively modest home, where Nkosi lay, loss flooded her eyes with tears.

"His race was run and I think we knew that a long time ago," she said.

"I'm exceptionally proud of Nkosi." In his short life, she believes, her son did more for South African Aids sufferers than anyone has.

Tributes to the boy poured in. Kofi Annan, the UN secretary-general, praised his courage, saying: "We have lost a voice."

Nelson Mandela, the former president, said: "It is a great pity that this young man has died. He was very bold."

Nkosi was particularly bold with Mr Mandela's successor, President Mbeki, who had dismayed the world with his apparent support for scientific mavericks who deny the link between the HIV virus and Aids.

Last July, so slight that he was almost lost in his suit, Nkosi took the stage in front of thousands of delegates at the 13th International Aids Conference in Durban. His words about an abandoned, three-month-old baby for whom Mrs Johnson had been caring, were more powerful than the most shocking statistics.

"Mickey couldn't breathe and he couldn't drink, he was so sick," Nkosi said. "So my mummy, Gail, had to phone welfare and to take him back and admit him to hospital. But he died. He was so cute. That's why I think the government must start giving AZT drugs to infected mothers and children."

In a public relations disaster, Mr Mbeki left the hall before Nkosi had finished talking. He had refused to pay the high cost demanded for the anti-Aids drugs that reduce the chance of transmitting HIV to babies.

Yesterday, the South African parliament and the Congress of South African Trade Unions were among those to praise Nkosi as an "inspiration".

There was no comment from Mr Mbeki, who appears to have changed his position on the Aids-HIV link. He says that all along he simply pointed out that HIV was just one cause of immune deficiency, as well as dirty water, poor nutrition and other infectious diseases.

The life of Nkosi Johnson, born HIV-positive, illustrates that poverty has fuelled the advance of Aids. Nkosi's father was a migrant miner. Girlfriends are common among miners who live far from home and might see their wives twice a year, as is the use of prostitutes.

And poverty, prostitutes will tell you, makes their profession a necessity, not a choice.

Gail Johnson believes that Nkosi's iconic status rested partly on the length of his survival.

Until last year, he was not on anti-retroviral drugs. Mrs Johnson could not afford them and by the time an American woman chose to pay for them Nkosi was too sick to benefit much. Nkosi became very sick last year. His adoptive mother says that until then three meals a day and vitamin supplies sustained him. Most South African children cannot rely even on those basics.

Mrs Johnson believes her son also survived because he was never forced to hide his condition. Concealment, which is understandable given the stigma attached, is HIV's ally, she believes. Nkosi was already "out" four years ago when Mrs Johnson fought against HIV prejudice to enroll him in school.

Nkosi was universally loved. The day before he died, Mrs Johnson allowed his picture to be taken after a sangoma (traditional healer) claimed she was exaggerating the boy's condition for her own ends.

Yesterday, the South African Human Rights Commission, which had been petitioned by the sangoma, ordered the healer to withdraw her allegations.

But some will continue to question whether Mrs Johnson was more activist than mother. One of her neighbours said yesterday: "Of course, she milked the situation as an activist because she wanted to help all those other infected kids she looks after. But I think she also loved Nkosi to bits. Some say she took his childhood, but Aids did that."

Five weeks ago, Mrs Johnson was furious when robbers broke in to her flat and took Nkosi's television and video recorder, and a pair of football boots from the South African footballer Lucas Radebe. "Is nothing sacred?" she said, describing how the robbers pointed a gun at the boy's face.

Mrs Johnson's tears yesterday were rare. She said: "Nkosi wanted people to know that infected people, and especially children, deserve everything in the world. His legacy is that we will care for them."
Nkosi's grandmother, Ruth, and great aunt, Mavis, said in January that they thought it was time for the boy to join his birth mother, who died four years ago.

Shortly before his death, Nkosi wrote: "I wish I was well like my second mother and my sister. Then I would be able to grow up. I would like to climb the highest mountain and bungee jump and meet movie stars in New York."

- INDEPENDENT