Nkosi Johnson is among the children to have survived longest with HIV, but this determined 11-year-old is now helpless Belinda Beresford
They come to praise him. And to mourn him, although the skeletal 11- year-old child lying unmoving in his bed is still doing the thing that brought him worldwide fame living.
For 11 years Nkosi Johnson has fought the good fight against HIV. He watched his mother and many of his friends die of the disease, yet that did not drain the bright, vigorous boy of life. But now the virus has attacked his brain, causing Aids-related dementia. Although there is still hope, the politicians, media and friends flooding his house make it clear they are attending a deathwatch.
Already the little boy who told his friends he wanted to grow up to be a policeman has brain damage. When a caregiver lifts him up, his long, bony limbs trail uselessly across the bed. He can communicate by squeezing his hands or moving his eyes and some of his facial muscles. A tube going down his nose is used to provide him with nutrients every two hours he’s incapable of eating. He wears a baby’s nappy.
His friends at Nkosi’s Haven founded and named after him by his foster mother Gail Johnson believe he’s improving. That perhaps he’ll return to play cards, eat pizza and buy sweets and crisps with them.
The reality is that even if Nkosi lives, he’s unlikely to be playing with his friends in the same way again. No one knows how severe or how permanent the brain damage is. Aids physicians say that he’s almost certainly going to die whether it be in a few hours or a few weeks.
His doctors and family say that Nkosi is a fighter, both against the illness and the prejudices surrounding it.
“He made it real,” says his foster mother. “That made a difference, and also the courage. Here he is, half the size of bloody nothing and he is still fighting.”
One friend at Nkosi’s Haven, HIV-positive Feroz Mohamed, says that she and Nkosi used to encourage each other to keep going. Each would flag sometimes.
“He was in two places at the same time. Sometimes he said he was tired and wished he could die, but he still carried on fighting.”
The two used to shout at each other for not taking their drugs.
“I went to visit him in hospital and I said to him that he must keep fighting. But I said that if he didn’t want to fight anymore then I would not be angry. If he has decided that he has had his time, then there it is,” says Mohamed.
When he was healthy, Nkosi’s favourite game was running around the house playing cops and robbers he was always on the side of the police. Six- year-old Ismail himself with the pointed, thin face of HIV/Aids lets out the truth, to giggles from his friends.
“Boys are the police, girls are the tsotsis,” he confided.
Nkosi likes girls especially his closest friend at Nkosi’s Haven, the aptly named Sweetiepie. But another mother from the refuge reveals that there was also a girl at school he liked as well, whom he didn’t want anyone else to talk to.
His foster mother paces her house in Melville, Johannesburg, walking from interview to interview. With her long red hair, and long pink nails, she presents a formidable figure. She speaks fairly unemotionally about Nkosi, whom she brought into her family at the age of two. But her face with its heavy layer of make-up has the fixed look of someone running on adrenaline and fearful of stopping in case she can’t start again.
She’s putting out the message: the need for money, drugs, care, Nkosi’s health, life and probable prognosis. “Terminal,” she says almost matter- of-factly.
Nkosi has a CD4 count (an indication of how strong the immune system is) of 2. Anything below 200 is regarded as a sign of full-blown Aids, with the normal level between 400 and 600. Effectively his immune system has been razed.
No one knows exactly what lies ahead for him: probably further brain damage and seizures. Possibly the destruction of his central nervous system will become so severe that he’ll eventually stop breathing. He may get pneumonia, known to doctors as the “old person’s friend” because it can provide a relatively peaceful exit from life. In that case his family and doctors may decide to let him die.
Asked what he is like, the circle of children at Nkosi’s Haven say: “Kind.” He shares his possessions. Then there is a silent rethink, as old memories come to the fore and the icon becomes a real boy. “Well, he isn’t always kind,” admits Sweetie-pie, recounting tales of fights, backed up with reminiscent smiles by her friends. He likes cleanliness and his clothes to look good. He gets deeply distressed when he soils himself or has to wear nappies. Mohamed too looks away, talking about the shame she and Nkosi share about the loss of dignity that goes along with involuntary incontinence.
Nkosi’s Haven encapsulates the missed opportunities in combating HIV in South Africa. Twenty-seven years old, Mohamed has been HIV-positive for 14 years. Her six-year-old son has the pointed, drawn face so often the hallmark of HIV/Aids, and a year ago she lost “perhaps it was for the best”, she whispers a child in the sixth month of pregnancy.
Outside in the sun, a one-year-old totters determinedly down the steps to the garden. “He’s an AZT baby,” says one mother. His own mother, now dead, was given AZT during her pregnancy, and the little boy was born free of the virus. Another child is identified as being a “Nevirapine baby”. Her mother received the one pill during labour that has been shown can cut the transmission of HIV to a newborn.
But inside the house, in the room with seven beds where the Aids orphans sleep, a three-month-old HIV-positive baby is lying on a bed. He is smiling in his sleep, his legs splayed in relaxation. The virus has yet to wreak the havoc on him that it has slowly done on Nkosi. But the child has roughly a 25% chance of dying before he reaches his second birthday and he is just one of the estimated 200 babies a day being born with the death sentence of the virus.
A lifetime away, Nkosi is one of the children known to have survived longest with HIV in South Africa. But the slight and determined figure that stood on the stage in front of thousands at the opening of the Aids 2000 conference in July and rebuked the country’s government is now helpless.
No one knows just how conscious he is. Told that his friends are hoping he will get better, and be back playing police and tsotsis with him, his ears and mouth twitch as he appears to try to smile. His eyes move, focusing on his visitor.
He liked being in the limelight, say his friends, slipping into the past tense. Coming back from trips to give talks, he’d sometimes be tired, but happy. He liked showing off his acquisitions to his friends, and telling them about his triumphs and adventures.
He liked to be tidy, and hated mess. He’d chastise adults for leaving their cups behind when they got up. He’d argue back if told off, and he liked to gossip.
He liked talking, but would get frustrated that he couldn’t speak Sotho and Zulu, the lingua francas of Nkosi’s Haven. He would complain that when he was with his biological family in Daveyton, other children would taunt him as “whitey” because he couldn’t speak their mother tongue.
He was jealous of his biological sister because she isn’t sick, confided Sweetiepie. He could be a bit bossy sometimes. Favourite drink? “Coke,” chorus the voices.
He’d finally accepted that he’d be staying down a grade in school at his mother’s insistence. This academic setback, due to lack of enthusiasm for homework, was also exacerbated by Johnson’s discovery that Nkosi had been spending a large amount of his school hours eating pizza with the headmaster.
But the child with personality and a bossy streak still knows what he wants.
“I played him some Mozart, and he really liked that,” said Johnson. “He squeezed my hand. But the whale music didn’t go down very well. It’s supposed to be soothing but there was no squeeze.” Dr Ashraf Coovadia, a paediatrician at Coronation hospital who treats Nkosi, says he has already survived longer than expected.
“Medically [he] is reaching the end of the road.”
The virus itself is attacking cells in Nkosi’s brain that maintain and clean the brain tissue. These cells contain CD4 receptors to which the virus binds before invading the cells and causing an inflammation and brain cell damage which is probably responsible for the seizures he is enduring.
Despite Nkosi’s position as one of the public faces of HIV/Aids, neither his biological nor his foster family were able to afford anti-retroviral therapy. In fact Johnson feels one reason why Nkosi has been an inspiration is because he has survived for so long with basic drugs against infections, three balanced meals a day and vitamin supplements. She also feels that being open about his illness has reduced the stress Nkosi faced.
However, last year an American woman offered to pay for the treatment, and Nkosi started undergoing triple therapy in June. He stopped the treatment a few weeks ago, saying that he didn’t feel better, but was persuaded by his doctors to start again with just two of the drugs.
He continues to receive his anti-retroviral therapy, passed through the naso-gastric tube into his stomach. Since an essential part of his immune system is gone, such treatment is the only thing that provides hope of survival, by dampening down the virus and its attacks on Nkosi’s brain.
Dr Shaun Conway of the International Association of Physicians in Aids Care says that while “salvage therapy” can be provided to help individuals whose viruses have become resistant to treatment, it’s complex, of limited success and prohibitively expensive.
“For people with advanced Aids the question becomes not how can I stay alive at all costs, but how can I die in the most comfortable way?” says Conway.
Coovadia is adamant that Nkosi’s condition is not caused by anti- retroviral drugs: “I can say unreservedly that the condition he’s in now is in no way the result of anti-retroviral therapy.” Conway agrees Nkosi’s dementia comes not from the drugs he has been taking but from a body that has run out of resources.
Having access to anti-retroviral therapy earlier may have allowed Nkosi more years of life. In the West, children with HIV are surviving to face the problems associated with entering the adult world. Nkosi will not have to face those problems. But he has long known why he would die because his family does not have the money to help keep him alive.
Or to put it another way, Mohamed recalled, “He used to wish he was a white person because he never saw a white get sick. And he didn’t want to be sick.”