The secret she won't tell him son

Tshakua was born HIV positive. For 12 years his adoptive mother has sheltered him from that grim reality, and from those who would spurn him for it. Now she has written a book about their struggles.

Twelve years ago, Therese Muamini's sister arrived in Paris from their native Rwanda in search of work. With her she brought her six-month- old son. Three days later, she was taken ill. The diagnosis, when it was eventually made, was Aids. It was one of the first cases of the disease to be identified anywhere in the world.

It was two years before she died, leaving Therese with the young toddler whose name was Tshakua. It was some time before his adoptive mother discovered that he, too, was HIV positive. Today, he has lived longer with the virus than almost anyone else known to scientists engaged in studying the disease.

In the years since that first diagnosis, Aids has become a part of our everyday vocabulary. So much so that it is difficult to comprehend what must have been the bewilderment of those who first stumbled across the disease, or to recall the full horror which swept the public at the first news of a plague that seemed more ruthless than anything since the days of smallpox.

Therese Muamini remembers it all, vividly. She has felt on her pulse the protracted progress of medical research with its many false dawns and blind alleys. She has lived, too, through the journey the rest of us have made in our attitude to the disease, a journey which is not simple or linear and which has been characterised by combinations of fear and phobia, disgust and duty, contempt and compassion.

Tshakua is now 13. Therese has set down the story of his life, and her guardianship of it, in a book, Mon Fils, Mon Amour, which will be published in the UK in October under the title Beloved Son - Born with HIV.

The book has sparked off a debate in French medical circles about the ethics of privacy and the right to withhold medical information from the patient. It is the remarkable story of one woman's struggle - in the teeth of opposition from doctors, friends and the French social services - not to hand over the boy to institutional care but to look after him herself.

Therese's fierce dedication and perseverance bordered on obsession; she made superhuman demands on herself, and badgered doctors, hospitals, schools, the social services and friends to do the same. Often, to those around her, the demands were unreasonable. She was undeterred, taking the boy and her other children (now aged 11, nine and six) to squat in the office of the Mayor of Paris or insisting on sleeping at Tshakua's side during his all-too-regular stays in hospital. It is a story of total self-sacrifice to the single aim of keeping Tshakua alive and in receipt of the best treatment.

Therese Muamini appears to bear no outward strain of the unceasing struggle of the past decade. The tall, stately woman who sits in a modest restaurant in the Fifth Arrondissement looks as cool and understated as any of the chic African women who have made Paris their home: she wears an elegant shift, ornamented by a single gold chain, and looks younger than her 44 years.

"Why write? To give other children the chance that if they lose their parents someone will come forward to help them, for we are all parents of those children," she says. "Aids frightens everybody. My story is there to tell them that you can live with someone with the illness, that we lived with him as a family, that we had a normal life, we ate the same things, from the same dishes, we used the same toothbrushes - not on purpose, but in a family it is easy to make a mistake with a toothbrush - and that no one else became ill."

Therese is not her real name. She has changed that, and all the names in the book. She has even changed her nationality - her original home is not Rwanda but one of its neighbouring countries. Even the professor of medicine in charge of Tshakua's treatment will speak only on condition of strict anonymity. Such caution is testimony to the stigma that still attaches to children who are HIV positive. In an attempt to allow the boy to live as normal a life as possible, they keep the nature of his condition secret from everyone - school, friends, even his own family. Therese has no copy of the book at home for fear it might give the game away. Most controversially, Tshakua himself does not know.

"He was one of the first children to present society with the HIV problem, so his story has served as a prototype," says the professor. He first encountered the depth of ordinary people's fear when Tshakua was two and was sent to a state creche. "The people there objected at first because they didn't really know what risk there might be to the other children. In a series of long telephone conversations, we insisted they must take charge of him. They were a public service and it was the duty of the state to look after him."

Therese and the doctors pursued the same strategy at school. "The teachers at his first school were always asking why he was off," says Therese, for Tshakua has succumbed badly to numerous childhood illnesses as well as developing the opportunistic infections characteristic of Aids Related Complex, the phase before the onset of the full-blown disease. "The doctors gave them explanations but didn't tell them it was Aids."

The professor says that he can still remember his phone conversations with the headmistress of that school. When she asked what was the matter with the child, he replied: "I've got nothing to say except that he can and must go to school like any other child and that's all there is to it." The approach is unchanged. "He goes three times a week for physiotherapy," says Therese. "The physiotherapist keeps asking what is wrong with Tshakua. I told him the doctors did not know. So he asked the hospital, but they would not tell him."

If the strategy is enormously controversial, it is easy to see why it has come about. Therese's life has been lived at the margins in any case. Public knowledge of Tshakua's true condition might well have made it impossible.

A few years after the child was diagnosed, Therese's partner left her. "He couldn't stand any more," she says. "He was taking the burden of the caring because I was out all day working - I had two jobs as a cleaner, which meant very early mornings and evening work." She got into debt, and soon afterwards their flat was repossessed. She moved in with friends but always hid her son's drugs: one family refused to let their children play with Tshakua when they caught a glimpse of the AZT. When her final friend threw her out, she found a room in a day-time brothel. "We had to vacate it during the day, which meant the children and I had to wander the streets." But they were thrown out of there, too, when the manager found that their scraps of cold food had attracted a cockroach.

After her sit-in in the mayor's office, she was given a council flat and things became more normal. She met men again but always fell out with them when they did not put the interests of Tshakua first. She did the same with friends from her local church when the demands she made on them seemed never-ending. Perhaps, I suggest carefully, she had been difficult to live with? "I do not think so," she replies. "People could have been more helpful, and they hurt me, but I must not judge them."

Nadine Bitner, who ghost-wrote the book and who translates into English for me as Therese speaks, sees things with a different eye. "She sees, but she doesn't imagine how things look to other people," the French novelist says afterwards. "She doesn't listen to other people." Reading the book, she does not seem to listen to Tshakua, either. "She doesn't. She's built walls around him to keep him happy inside them. But in fact he is unhappy. She gives him everything, even the unhappiness."

Therese is not letting go as the boy enters adolescence. "When he was little he would throw away his drugs. I would find them behind the refrigerator," Therese recalls. "Now he won't. He's becoming more conscious. But I don't leave him to take them alone. I still supervise him. Recently he's become quite prudish. He won't take his clothes off in front of me. So one day I made him. It's because he's got hairs. ..."

The doctors now want Tshakua to start seeing a psychiatrist, but his mother refuses to give her permission. "He's a normal adolescent boy," she insists. "Yes, and I begin to give him advice as a mother: if a girl looks at you, I say, you must never, never go with her. If you must, come to me and I will give you condoms. You must hide nothing from me." And what does he say? "He says, 'Yes Mama'. I know my son. I don't believe he would do anything without telling me."

The key to Therese's ferocity, Nadine Bitner thinks, is to be found in the fact that the boy is adopted. "If he finds out he's got Aids, he'll find out she's not his mother. She's more afraid of that than of what he will do when he learns he's got Aids."

The boy, his mother says, is "well at the moment, and yet there are moments when his illness appears and he gets very tired. At present he's buying things for the return to school. He wants to be a fireman when he leaves school." How does she feel about that? "Yes, of course he will, because he has a good heart," says his mother. Does she really think that, or is she merely thinking positively to ward off the inevitable? "I daren't ask her that," says Nadine. "She must be ready for his death somewhere. She has talked to me about having another child to fill the gap ... but I daren't ask her that."

If she had to do it again, starting now, would she do anything differently? "No. I would do exactly the same. I can't imagine a difference. Love is instinctual. I would do the same. Why not?"

Before we part, I ask if there is anything else of importance which I have not asked. "Ask me," she says, "if something happens to the boy, how shall I be?" I ask. She pauses. "I don't know. It's too hard."

'Beloved Son - Born with HIV' by Therese Muamini, as told to Nadine Bitner, translated by Barbara Bray, will be published by Prion on 27 October, price pounds 12.99 (hardback) and pounds 5.99 (paperback).