J O H A N N E S B U R G, South Africa, June 1, 2001 -- Nkosi Johnson, a boy born withHIV who became an outspoken champion of others infected with theAIDS virus, died today of the disease he battled for all 12 of hisyears.
His foster mother, Gail Johnson, said he died peacefully in hissleep early this morning.
Nkosi collapsed in December with AIDS-related brain damage andviral infections. He was not expected to live much longer.
On Thursday, Nkosi lay bedridden in a semi-comatose state,horribly emaciated and reduced almost to a skeleton. A feeding tubeprotruded from his nose. Gail Johnson said he had been unable toeat solid food since last year and had been suffering seizures.
In a recent statement, former President Nelson Mandela calledNkosi an "icon of the struggle for life."
"Children, such as Nkosi Johnson, should be enjoying a lifefilled with joy and laughter and happiness," said Mandela. "On afrightening scale, HIV/AIDS is replacing that joy, laughter andhappiness with paralyzing pain and trauma."
Praised for His Openness About AIDS
Nkosi had been praised for his openness about his infection in acountry where people suspected of carrying the AIDS virus often areshunned by their families and chased from their communities.
"He had an awareness of the threat to his life and theimportance of his life in lessening the threat to other people withAIDS," said High Court Justice Edwin Cameron, who is also infectedwith the virus.
During his short life, Nkosi successfully contested and changedthe policies that kept HIV-infected children out of public schools.With remarkable openness he talked about his own infection,challenging people to re-examine their fear of those afflicted withAIDS.
Nkosi was "a person with maturity far beyond his years, withthe wisdom and courage of many adults accumulated together,"Cameron said recently.
Hated Seeing Sick Babies, Children
Nkosi rose to international fame when in a speech at the openingof the 13th International AIDS conference last July in Durban heasked that AIDS sufferers no longer be stigmatized.
Nkosi was born Feb. 4, 1989, with the virus that causes AIDS.His mother could not afford to bring him up, and Gail Johnsonbecame his foster mother when he was 2. Nkosi's mother died ofAIDS-related diseases in 1997.
Johnson said Nkosi had a warm sense of humor. He would often tryto get out of his household chores, such as feeding the family'sfive cats. Toward the end of his life, when he was too ill toperform such tasks, he told Johnson he was sorry for letting herdown.
In 1997, the two successfully battled to force a public primaryschool to admit him despite his infection.
The fight led to a policy forbidding schools from discriminatingagainst HIV-positive children, and to guidelines for how schoolsshould treat infected pupils. About 200 HIV-positive children areborn in South Africa each day, but most die before they reachschool age.
Nkosi was crushed when a 3-month old baby his foster mothercared for died of AIDS.
"He hated seeing sick babies and sick children," Johnson said.
‘A Symbol of Resistance’
The experience led to his speech at the AIDS conference, wherehe urged the South African government to start providingHIV-positive pregnant women with drugs to reduce the risk oftransmission of the virus during childbirth.
A year later the government is still studying proposals to usethe drugs.
"(Nkosi) was a symbol of resistance in a different sort of way,and I hope that this is now a lesson for us as government to do ourbest to deal with this AIDS scourge," Winnie Madikizela-Mandela, amember of parliament and head of the ruling African NationalCongress' women's league, told 702 talk radio.
Nkosi became seriously ill in late December and he sufferedbrain damage that left him unable to eat and speak. As he lay dyingin his home, a stream of visitors stopped by to pay their respects.
Some South Africans have questioned whether Nkosi's spot in thelimelight robbed him of his childhood.
But Cameron, the high court justice, said Nkosi enjoyed hispublic role and did only what he wanted to do.
Nkosi helped raise money for Nkosi's Haven, a Johannesburgshelter for HIV-positive women and their children. He wanted to beremembered as someone who helped remove the stigma surroundingAIDS, Johnson said. Nkosi's birth uncle, Fika Mbambo, said Nkosisucceeded in doing that, and in making people less reluctant toreveal their HIV-status.
"I think he has done a lot for AIDS," Mbambo said. "He was abrave man. He was very strong. He never complained."