Some beg to be allowed to pay homage at the bedroom door. Others come to mourn even though life still flickers in young Nkosi Johnson. There are even those promising to heal the 11-year-old boy who first caught South Africas imagination as a victim of bigotry, and then as the child who scolded President Thabo Mbeki to his face in front of an audience of thousands.
But his foster mother, Gail Johnson, sends them away. The doctors have said that AIDS is finally about to claim one of South Africas best known victims of the disease. - It could be six hours, six days or maybe even six weeks, but I think the general feeling is that he is terminal, she says.
Nkosis lip quivers as he tries to manage a smile but the virus eating at his brain and the seizures of recent days have taken their toll. The diarrhoea which set in a few weeks ago - the first harbinger - has drained the flesh from his tiny frame. Nkosi does not even have the energy to turn himself over anymore. He communicates mostly by squeezing Johnsons hand. - I played him some Mozart and he really liked that. He squeezed my hand. But the whale music did not go down very well. It is supposed to be soothing but there was no squeeze, she says.
Nkosi was infected with HIV at birth. Nkosis mother, Nonhlanhla Khumalo, left him at a refuge as a baby. She told the staff she could not take care of him because she was scared of her neighbours reaction. But she regularly visited her son until she died of Aids-related illnesses four years ago.
Johnson took the boy in to her home nine years ago when he was almost a lone black face in an AIDS refuge mostly filled with gay white men - an age when most South Africans still thought of it as a homosexual disease. Now, about 200 babies are born with HIV each day in South Africa. One quarter will be dead before their second birthday. That is part of what has brought a stream of people to Nkosis bedside, including the presidents wife, and led to a public burst of admiration and sympathy on radio talkshows.
The boy has survived with the virus probably longer than any other child in the country. And he has done it without the help of AZT and other drugs that few black people can afford, until just a few months ago when an American benefactor stepped in.
But it is also his status as an - innocent victim - neither judged for his sexuality nor for promiscuity - that has allowed so many people to openly grieve for a boy described by Nelson Mandela yesterday as an icon of the struggle for life. - Children such as Nkosi Johnson should be enjoying a life filled with joy and laughter and happiness. On a frightening scale HIV/Aids is replacing that joy, laughter and happiness with paralysing pain and trauma, said Mandela.
Nkosi captured the public eye three years ago when Johnson registered him for a Johannesburg school. As required, she noted on the application form that he was HIV-positive. - That created havoc because at that stage there was no policy on how to deal with an infected child in the classroom, she says. I discovered that the schools governing body and the parents had a secret meeting about Nkosi without telling me and they were split fifty-fifty over whether to admit him. I only found out when one of the parents called a reporter and told him what had gone on.
Nkosi was finally admitted three months later, once all the teachers had attended a workshop on how to deal with HIV-positive children. The case attracted enough public attention to lead to a certain amount of hand wringing about what it meant to have Aids. One of the results was a lessening of the stigma around the disease. Another was a fundraising campaign that gathered enough money for Johnson to launch - Nkosis Haven -, a home for women with the virus and their children - some infected, some not. It was after his mothers death, and the episode at the school, that Johnson says Nkosi started to get agitated about AIDS.
Last July, he addressed the international AIDS conference in Durban. Dressed in a suit, standing in the middle of a stage and facing thousands of delegates, the small boy with a tiny voice recounted the misery of losing his mother to Aids and attacked the government for failing to provide drugs to pregnant HIV-positive women.
I just wish that the government can start giving AZT to pregnant HIV mothers to help stop the virus being passed onto their babies, Nkosi said. Babies are dying very quickly and I know one little abandoned baby who came to stay with us and his name was Micky. He could not breathe, he could not eat and he was so sick and my mummy, Gail, had to phone welfare to have him admitted to a hospital and he died. But he was such a cute little baby and I think the government must start doing it because I do not want babies to die. The speech shocked and saddened many at the conference. So did Thabo Mbeki who left while Nkosi was still offering his rebuke of the governments neglect of poor black mothers and the presidents politicking over AIDS. Mbeki s office later said he was pressed for time but critics argued that, at the very least, it was crass to walk out of the hall during the childs brief speech.
I do not know why he walked out, says Johnson. They said he had to get to Gabon or somewhere, but they had already made sure that Nkosi did not speak before the president. Nkosi s speech was not very long but the president left in the middle.
After that came the whispering campaign accusing Johnson of exploiting Nkosi for profit or political ends. She shrugs off the accusation, and there is certainly nothing in the trappings of her chaotic and modest home to hint at wealth. I have been accused of exploitation of course, but we do not take money for his speeches. When people want to donate it goes to Nkosi s Haven not to me. To be honest, 99% of the time I have had nothing but people saying, Thank you for doing something, she says.
Johnson is imposing and formidable. Her face is overdone with thick make-up favoured by middle-class white women in South Africa, and long fake nails that reveal her impatience as she taps them up the side of a glass of cola. She snaps at the burgeoning group of wellwishers to shut up when they get too loud. When Johnson first took Nkosi in she was told he would not survive more than nine months. At first she had little idea how to deal with an HIV-positive child. When I first got him I was having him tested (for his blood T-cell count) every month but he just carried on being well and lived his life so I gave up, she says.
In the absence of money for drugs, Johnson says Nkosi survived on a healthy diet, vitamin supplements and minimising the stress of being HIV positive. She thinks the last element particularly important. Nkosi has not had to live with the stress of a lie which so many people in this country have to. He has been free with his Aids, so to speak. He does not have to lie about why he ca not play football. I think that relieved him of a great burden that many other people have, she says.
Johnson was divorced four years ago. Friends say she was forced to choose between Nkosi and her marriage. She hints that she was alone in her dedication to the child when asked if she could have afforded anti-Aids drugs for him. Because I forced Nkosi onto this family, I could not ask my husband to carry the cost. That would not be fair, she says.
Last year, Nkosi was invited to America to talk at another conference. It was there that he was for the first time offered the drugs his family could not afford. But that was just seven months ago and they were of limited benefit; he was already succumbing to the disease. Almost to the last, Nkosi attended the school that had once tried to reject him. He did not do particularly well academically. Johnson puts that down to the kindness of the teachers.
He was not too good, but I found out this year that he was hardly in class. He spent most of his time with the headmaster eating pizzas, she says.
Nkosi attempts a smile when someone arrives with a message from his schoolmates that they want him back soon to play - police and tsotsis - South African cops and robbers. Yesterday a note arrived from Nkosi s girlfriend, Sweetiepie Khumalo. Older friends and neighbours are allowed to see him, but Johnson keeps the rest at bay.
We have got people who want to come and do the healing and that kind of thing. It is more for their need than mine. I do not want Nkosi inundated with strangers in his room. I tell them they can just as easily heal him from their own houses, she says.
Some have called on Thabo Mbeki to visit Nkosi, but the president has been badly stung by the local and international denunciations of his controversial Aids policies - and criticism of the human cost describe by the young boy at the Durban conference - so he has largely withdrawn from the public debate over the disease.
Instead, Mbeki sent wife, Zanele, to visit Nkosi. It was said to be a private visit but it was saturated in politics. Johnson left the two alone in the bedroom.
Nkosi s grandmother, Ruth, and great aunt, Mavis Khubeka, are often at his bedside. They think the time has come for him to - join his mother. I do not want to see him suffer more before he dies,his grandmother says.
Perhaps he has run his race and it is too much to ask him to run anymore, says Johnson. He has done his bit. He has given Aids a face and shown that Aids does not discriminate. It attacks all races, all ages. He has also given people hope because until recently he was not on the drugs. To many people he is a little hero just for having survived this long.
Guardian Unlimited © Guardian Newspapers Limited 2001
by Guardian Newspapers