Nkosi's story

Nkosi Johnson

Inigo Gilmore profiles Nkosi Johnson, an 11-year old boy who is dying of Aids, and whose struggle has become a cause celebre in South Africa

  Ten months after Nkosi Johnson took the stage at the International Aids Conference in Durban to appeal for people living with HIV/Aids to be treated with dignity the dying child is now held up as a potent symbol of hope in the fight against South Africa's devastating epidemic.

Since Nkosi slipped into a coma at the turn of the year his progress has been followed like a popular soap opera in South Africa where Nelson Mandela has described him as "an icon of the struggle for life".

As Nkosi has bravely clung to life against all the odds - even surviving an armed robbery at his home - the media has returned to his remarkable story over and over again.

A Life in Limbo

From the outset Nkosi, whose birth name is actually Xolani, lived a life in limbo. For Gail, a strong and articulate woman, it was a question of doing "the right thing" when she fostered Nkosi at the age of three before he lost his birth mother to Aids.

Gail was told he would probably only live months and obviously never imagined he would still be with her nine years later.

Gail and Nkosi Johnson

Tall, with long flowing dyed red hair and brightly painted nails, Gail's physical contrast to her small, fragile black foster child is striking. She recalled: "I did not ever think I would have a black child with Aids in my home, ever - but I've got him and that's great."

Gail and Nkosi first came to prominence five years after he moved in with her, when she met stiff opposition over getting him admitted to their local primary school in suburban Johannesburg.

Many of the parents objected because they did not want their children mixing with an Aids child and Gail's victory over his admission was important in changing attitudes towards Aids.

While Nkosi may have been accepted into Gail's home and shown love by her family his black skin betrayed him as the foster child of a white woman. As he was unable to speak his birth language, Zulu, his interaction with other black people was awkward.

In the absence of money for drugs, Nkosi survived on a healthy diet, vitamin supplements and minimising the stress of being HIV positive.

Gail attempted to give him a purpose by turning him into a spokesman for Aids awareness at a time when the country's infected population was silenced by the suffocating stigma of fear and prejudice.

I hate having this disease

Nkosi Johnson

But for Nkosi, who had seen his real mother die of Aids, the frightening inevitability of his own impending death was never far away.

"I feel I am going to die quickly, like my mother died, very soon," he told me. "But at least she got to be a grown up. I hate having this disease."

Legacy

Gail worked hard to ensure that he would be able to leave a legacy behind by pushing him centre stage in her fundraising efforts for a series of care centres - Nkosi's Havens - for other infected children and their mothers. But members of his black family felt uneasy, claiming that Gail was exploiting Nkosi for financial gain. She remained unfazed by the criticism and pushed ahead.

Nkosi Johnson speaking at the Durban AIDS conference, July 2000

The unlikely couple went on a fundraising mission to New York and while the experience was an exhilarating one for Nkosi it clearly left him physically exhausted.

Next stop was the International Aids Conference in Durban where there was great anticipation over a speech by an infected boy at a time when South African government was under fire for failing to tackle the world's fastest growing epidemic.

Thabo Mbeki scolded

Wearing a suit Nkosi moved the audience by calling on those present and millions across the world to accept people living with HIV-Aids. He scolded President Thabo Mbeki for not providing anti-Aids drugs to millions of infected South Africans.

President Mbeki walked out during his speech but the snub only drew more attention to Nkosi's message.

We are human beings. We can walk, we can talk, we have hands, we have feet just like everyone else. We are all the same

Nkosi Johnson

Nkosi told his audience: "When I grow up I would like to lecture more and more people all over the world if my mummy Gail will let me. To teach to not be afraid, to care, respect. You cannot get Aids from hugging, kissing, holding hands. We are human beings. We can walk, we can talk, we have hands, we have feet just like everyone else. We are all the same."

Brain seizures

A prayer gathering for Nkosi

But Nkosi clearly was never going to grow up and when news emerged six months later that he was seriously ill after suffering a series of brain seizures it prompted a national outpouring and a media frenzy.

The South African football captain Lucas Radebe, who plays for Leed United, was one of many celebrities who came to the house to pay homage at the bedside of the brave boy. There were calls in the media for President Mbeki to visit. In the end he sent his wife Zanele in his place.

The story of this "innocent" child and his impending death have united South Africans against Aids in ways previously unimaginable. Gail Johnson said: ''He's given Aids a face and allowed people who are still afraid of being associated with Aids to grieve openly. Most importantly perhaps, his fight and his bravery have given hope to many, many people."

You can contact Nkosi's Havens by writing to:
POB 403 Melville
Johannesburg
South Africa 2109

Or by e-mail at:

[e-mail]

Nkosi's story: Sunday 20th May at 19.20 BST on BBC 2.

Reporter/Director: Inigo Gilmore
Deputy Editor: Farah Durrani
Editor: Fiona Murch