Nkosi: A force for change

Gail Johnson battled prejudice to give Nkosi a home

Nkosi Johnson, the 12-year-old South African boy who has died of Aids, did more than anyone else to strip away the misconceptions about the disease that is ravaging his country.

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

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

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

From the outset Nkosi, whose birth name is actually Xolani, lived a life in limbo.

Adopted

For his foster mother Gail Johnson it was a question of doing "the right thing" when she fostered Nkosi at the age of two before he lost his birth mother to Aids.

Nkosi Johnson speaking at the Durban AIDS conference, July 2000

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

"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," she said before his death.

Prejudice

Ms Johnson 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 Ms Johnson's victory over his admission was important in changing attitudes towards Aids.

While Nkosi may have been accepted into Ms Johnson'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.

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.

A prayer gathering for Nkosi before his death

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.

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

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.

American actor Danny Glover with Nkosi

The South African football captain Lucas Radebe, who plays for UK's Leeds 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 has united South Africans against Aids in ways previously unimaginable.