AIDS

In a small house at the end of an overgrown path, Agnes Namutebi's mother lies dying. Emaciated and covered in skin lesions, she is unable to lift herself out of bed. Relatives visit and think maybe they can heal her if they bring her back to their village. So they fashion a wheelchair out of a stool and a bicycle and take the woman away. Agnes, then 8, and her three younger siblings never see their mother again. They learn later that she has died, taken by the same merciless illness that stole her father three years ago.

In another house in the same village, Richard Kibbi's mother struggles to speak. She holds her son's hand in hers and whispers, "Take care of your brothers and sister. Teach them right and wrong and protect them." She laments that the children's father is already dead, and now she is leaving, too. Richard was just 14. Richard and Agnes, who don't know each other, live a couple of miles apart in Rakai, a lush rural district in southern Uganda that has been devastated by AIDS. For the past 20 years, the country, one of the first in Africa to be hit by the epidemic, has struggled to gain control of its spread. In the late 1980's the Ugandan government launched a campaign advocating abstinence, monogamy and condom use and managed to significantly slow the rate of infection. According to some estimates, the prevalence rate has dropped from a national average of 14 percent in the late 1980's to 5 percent in 2001, a reduction unprecedented in Africa.

But among a population of about 26 million, that means there are still hundreds of thousands of Ugandans already infected and dying from the virus each year. And Uganda is just part of a larger crisis. A 2003 report released by the United Nations Children's Fund (UNICEF) calls the AIDS situation in sub-Saharan Africa an epic disaster. In 1990, according to the report, 1 million children under the age of 15 in sub-Saharan Africa had lost one or both parents to AIDS. In 2001 that number had risen to 11 million and by 2010 is expected to rise to 20 million.

In communities like Rakai, almost a third of the adult population has been wiped out--not just mothers and fathers, but aunts, uncles and neighbors--creating a new AIDS-related crisis: With so many adults wasting away, who will take care of the children?

Two Plots Under a Banana Tree

Three years after his mother's death, Richard thinks of his parents often, especially at night. "I dream about us digging in the garden or spending time together as a family," he says. Like the majority of orphans, Richard is not HIV-positive. (Only a third of children born to mothers with HIV/AIDS test positive for the virus, and many of the older orphans, like Richard, were born before their mothers became infected.) Now 18, he's lean and handsome with broad shoulders and a shy, closed-mouth smile. With his younger brother, Salif, 9, at his heels, he walks around the side of the house to his parents' graves, situated under the shade of a banana tree. The plots are covered with stones and bright flowers. "My father worked repairing bicycles in the trading center," says Richard, pointing to one of the plots. "I remember him as a quiet kind of man. He used to love us so much. After work he would bring us sweets, which made us so happy. My father taught me not to be lazy. And my mother taught me to greet adults with respect."

Every Sunday afternoon Richard calls a meeting with his three younger brothers, ages 15, 12 and 9, and his little sister, Miriam, 7. "We discuss how to behave," he says. "I tell them to be humble and to work hard. I teach Miriam to kneel when she greets an adult, and I show the boys how to stand straight, the way my mother taught me. Mostly, I teach them what my parents taught me before they died."

His father was the first to become ill. To this day, Richard says he is not sure what made him sick. "I was too young for anyone to discuss it with me," he says. But four years later, when his mother also fell ill, she pulled her son aside and told him she had Slim, the Ugandan slang for AIDS. And she told him she was going to die.

"I hoped for her to recover," says Richard. "But she complained of terrible stomachaches and had very bad diarrhea and vomiting." Sometimes female neighbors would come over to bathe her, but most of her care, including cleaning the basins into which she would be sick, fell on Richard. On the Saturday afternoon in May 2001 when she passed away, all her children were at her bedside. "We had been in the yard eating lunch and a neighbor called us inside," Richard remembers. "My mother was in her final moments. I held her hand; it felt limp and then I saw her eyes roll back. The neighbor told me this meant my mother would soon be dead."

When his mother stopped breathing, Richard cleaned her, straightened her limbs, and dressed her in a black-and-white gomesi, a traditional dress that her husband had given her. Then, in what had become too familiar a ritual, Richard sat by her bed and waited for the mourners to come.

A Disease Called Slim

Sixty miles east of Rakai lies Lake Victoria, the vast body of water shared by Uganda, Kenya and Tanzania. Several million people live within 50 miles of the lake, making it one of the most densely populated areas in Africa.

In Kasensero, a fishing port not far from Richard's village, the beach is teeming with rubber-booted men loading fish from their weathered boats into trucks that will take their haul inland. Just above the shore, serving the hundreds of men who work on the beach, is a busy trading center with run-down shops, places to eat, a community AIDS clinic and a maze of narrow alleys lined with small wooden shacks featuring signs that read "Motel" in faded hand-painted letters. Sometimes women in evening clothes park themselves on benches in the bright mid-morning sun. Like many places that serve a transient workforce, Kasensero hosts a thriving business in prostitution. The center is also home to the first confirmed cases of AIDS in the country. Some people call Kasensero Ground Zero.

"In the beginning we didn't know what the sickness was," says Christopher Muwau, 74, a launderer who has worked on the shores of Lake Victoria since 1980. "We thought the traders had become bewitched. People's hair would fall off and they would have sores on their bodies. Some would go to hospitals, and some would go to traditional witch doctors. They would be given herbs or told to make sacrifices to the spirits. But still the disease stayed. We were besieged; trouble was all around us." Muwau sweeps his arm wide to indicate the expanse of the beach. "When the men could no longer work, they would leave the trading center to go back to their villages and their families," he says. "That's how it spread."

It wasn't until the late 1980's, after young men in the Ugandan army started falling sick, that the government launched a massive public-education campaign about HIV/AIDS. But, unchecked for years, the virus had already taken hold. Patrick Kaganda, 38, a farmer who lives in Rakai with his wife and two children, has come to know the circumstances of the people in the village better than most. Kaganda volunteers with World Vision, a Christian relief and development organization that helps AIDS orphans in the area. Over a IS-minute drive along the two miles of dirt road that run between Richard's and Agnes's homes, Kaganda chronicles the toll AIDS has taken on his village. Across from Richard's house is a shell of a building. The husband died in 1996, the mother in 1998, leaving behind three daughters. Next to Richard's yard are the crumbling remains of the house that used to belong to his uncle. He and his wife died in 1989; their three adult children are now also dead. Next to that, another empty house. The man lost a wife to AIDS, married again and that wife died as well. After the third wife got sick, the man abandoned his house. The couple who lived next door are also dead. Next is a house where a grandmother lives with eight orphans--the offspring of her six grown children, all dead of AIDS. Across the road, a household of orphans next to a home where a man lives with his wife and nine children. Last year the man tested HIV-positive. And on and on: Three graves by an abandoned house, next to the crumbling foundation of another. The men and women who lived there dead, dead and dead.

The Orphan Factory

At Richard's mother's burial everyone wept. The women brought food for the children, and the men counseled Richard to be strong. Then, one by one, the mourners went home and the children were left to take care of themselves.

They learned to do without almost everything: money, proper clothes and oil for their lamps. They took to eating in the yard before night fell and then going to sleep as soon as it was dark. They all had terrible nightmares. Miriam, who was only 4 at the time, kept asking over and over when their mother was coming back. Richard would show her the grave under the banana tree, but Miriam still kept asking.

Like many homes in the village, Richard's house was made of mud bricks and covered by a thatched grass roof. For years, without their father around, the house had fallen into disrepair. One night there was a great storm. The children moved across the road to sleep in an empty house. In the morning they woke up to see that the roof had blown right off their home.

"The situation for these children is very serious," says Veronica Nandutu, a program coordinator for World Vision, the only international relief agency with an office in the district. "When the parents get sick, they sell everything to support the family and to get money for medicine and food. So when they die, the children are left with nothing." Some of the children are so poor they are dressed in rags. Either they have no extended family or what family they have has already taken in too many orphans. "One elderly woman we assist has lost seven of her eight children to AIDS," says Nandutu, who is Ugandan. "She is not in the best health and is raising 19 grandchildren."

On another continent, children like these might end up in an institution or be put up for adoption. But as with most African countries, adoption in Uganda is rare. For centuries there has been little need to find homes for children who had lost their parents; there was always family to take them in. "Uganda has a really strong culture of extended-family kinship, which is admirable," says U.S. Senator Mary Landrieu (D-LA), who, last May, led a delegation to Uganda to investigate the plight of orphans in the country. The problem is, with a million children who've lost parents to AIDS in Uganda alone, and some 11 million orphans in communities across sub-Saharan Africa, the continent's social and political systems are overwhelmed. Says Landrieu: "AIDS has become an orphan factory."

Night Dancers in the Yard

The roof of Agnes's home is filled with holes so large that when it rains, water pours inside. The walls of the house, made of clay bricks, have begun to buckle, creating crevices big enough for a child to put her arm through. Agnes, now 13, stands in the middle of the main room, her torn blue dress flapping around her calves. The floor is covered in debris from the disintegrating walls. "When it rains, what can we do?" she says and shrugs. "We get wet."

For the past five years, Agnes, a petite girl with a ready smile, has been living in the house with her three younger siblings and a niece. The niece was left behind by Agnes's older sister, Tiba, who went to work in Kampala as a house girl.

Agnes steps into a small back room and points to a corner. "This is where we sleep," she says. There is no mattress or blanket, just some rags. "My mother left two dresses behind," the child explains. "I put one on the floor and we cover ourselves with the other. The funny thing is we all fit."

Joseph Sseggingo, a farmer who lives nearby, says he remembers Agnes's parents well. "They had settled here from Tanzania," he says. "The father died in 1996 and then the mother became ill." A few months after the mother was taken away, Sseggingo came to check on the children and found them sitting in the overgrown yard, listless and unkempt. Molly, Agnes's youngest sister, was 3 years old. "There was no one taking care of them," Sseggingo recalls. "The children were so thin they looked like they were dying."

Sseggingo, who is the information officer of the village council, called a community meeting to address the issue. For two years, he says, the community pitched in to feed the children. Sometimes Sseggingo himself would go from house to house gathering food to bring to Agnes. But when Agnes turned 10, the council, already burdened by the dozens of other orphans in the area, decided she was old enough to work.

"I sell my labor," Agnes explains. "As soon as it is not too dark to wake up, I go into the village and look for work." She goes from one home to the next asking people if they need help weeding or planting crops in their yard. "Sometimes there is no work, and we are hungry," she says.

According to Veronica Nandutu of World Vision, girls like Agnes are among the most vulnerable orphans: They're young, poverty-stricken and ripe for exploitation by the very people they turn to for help. "In addition to having to provide for their siblings," says Nandutu, "these girls have personal needs, especially when they become teenagers. Like all teenage girls they need undergarments, they need feminine-hygiene products, and they need things that define their identity."

Nandutu says men, some of whom are infected with the AIDS virus themselves, will offer girls money and food in exchange for sex. Others offer marriage. "It's not like a real marriage," says Nandutu. "But for lack of a better word we call it that. As soon as the girls reach 12 or 13, the men just take them to come and live with them. For these girls it's a way of survival." Not surprisingly, Robert Mayanja, M.D., director of Rakai District Health Services, observes that as many as 60 percent of teenage mothers in the area are orphans. In addition, orphaned girls report much higher instances of rape than nonorphans. "The girls are suffering because they are not protected by a family structure," he says.

But if you ask Agnes what scares her most, she doesn't mention any of this. She doesn't speak of men who try to entice her, or a fear of getting AIDS. What she's afraid of, she says, are ghosts and goblins--she calls them night dancers. And although she has never seen one, she's sure they exist. "They come when it's dark and dance around in the yard," she insists, her eyes growing wide. "I am very afraid of that!" This is the truth of orphans left to raise themselves: While they carry the real-life burdens of adults, they are still only children.

It's not just families of children who suffer when orphans are left without adult support, points out Paul Zeitz, executive director of the Global AIDS Alliance, an organization devoted to ending the pandemic through global advocacy. An entire society can suffer the consequences, in 2002 southern Africa was hit by a minor drought, the kind of weather fluctuation that local traditions accommodate through modified farming practices, says Zeitz. But because of AIDS, scores of young people in the region had grown up without the agricultural skills historically passed from one generation to the next. "What would have been manageable became a chronic famine," Zeitz says. "They just didn't know how to respond."

But Zeitz believes that improving the future for the millions of children whose parents have died of, or are living with, AIDS is a realistic goal. "It's important for people to understand that we have solutions to this crisis," he says. "We know how to provide education, health care and life-skills training for these children. We have the resources and the know-how, which we aren't using. What we don't have is the political will to mount an effective comprehensive response." Zeitz says making antiretroviral drugs (ARVs) readily available to those living with HIV would make a significant difference in the lives of vulnerable children. "These are lifesaving AIDS medications," he points out. "They allow parents to live longer, healthier lives so you're not creating orphans in the first place."

Last year President Bush unveiled his $15 billion five-year Emergency Plan for AIDS Relief. His administration claimed that the first disbursement of funds this year would nearly double the number of people in sub-Saharan Africa receiving treatment. But the announcement was heavily criticized by advocates who complain that the money is not being spent wisely. Among other things, they argue that the ARV drugs supported by the plan are the expensive nongeneric drugs manufactured by large pharmaceutical companies that support Bush. As a result, the drugs supplied won't begin to meet the demand for them. "The World Health Organization hopes that 3 million people worldwide will be on ARV treatment by 2005," Zeitz says, "But that's only half the number of people who need it,"

Building Hope, One House at a Time

Four years ago, shortly before the roof blew off Richard's house, a neighbor from the village brought the family's situation to the attention of World Vision relief workers. For many children, getting the attention of a humanitarian agency is their only hope. In Richard's case, the organization supplied materials and paid for the labor to build the family a new four-room brick house with a corrugated tin roof. The house is far more durable than the children's old home and cost less

than $2,000. World Vision also arranges for the children's education, including vocational school for Richard, who is studying to be a tailor, a profession he chose because he says it will keep him close to his family.

Perhaps most significant, the organization has connected Richard with volunteers who act as surrogate parents. At least twice a week volunteer Patrick Kaganda checks in on the children. Often, his help is as simple, and as important, as helping the siblings settle an argument. "Sometimes I would ask my brother Pascal to do something, like fetch water," Richard explains. "But he would want to go into the village to see his friends. So I called Patrick. He advises me about many things."

But relief workers in the region are spread thin. A 2003 census in Rakai district counted 943 families that were headed by children under the age of 16. World Vision is working with only half of them. Fortunately for Agnes, she is now among those who are receiving help. The agency recently completed construction of a new home for the family and enrolled the older children in school. "Because Agnes was going back to school, we needed someone to stay with the children, prepare their meals and take care of the home," Nandutu says. Fortuitously, local leaders were able to locate an aunt, a sister of the children's mother, who was doing housework in a nearby village in exchange for food and shelter. The aunt accepted the agency's invitation to move in with the children, and volunteers continue to provide the family with counseling and other assistance.

In this tiny village, Agnes and Richard and their siblings--ten orphaned children in all--have been rescued. They have the resources of an international agency and the care of a group of adults willing to give them the guidance and support they need. But in a regional crisis that promises to get worse before it gets better, the waves of orphans keep coming, with no end in sight. "Last week," says Veronica Nandutu with a deep sigh, "a 15-year-old with seven orphaned siblings knocked on our door."

HOW YOU CAN HELP

More than 11 million African children under age 15 have lost one or both parents to AIDS. "People think the situation is hopeless, but it's not," says Paul Zeitz, executive director of the Global AIDS Alliance. From writing your congressman to organizing your church members, taking concrete steps will get results:

1. Contact your congressperson. Congress votes on legislative changes and budget appropriations that could mean life or death for millions of African children. "But every year we have to right to get the money we need," says Rory Anderson, Africa policy adviser for World Vision. "Africa has never been a priority with policy makers, so we need to push our politicians to make a difference." For more information, or to download a letter to send to your representative, go to keepachildalive.org, hopeforafricanchildren.org or globalactionforchildren.org.

2. Raise awareness. "If people were made aware of what's going on, they would be inclined to do something," says Jennifer Delaney, former communications manager for Hope for African Children Initiative. Delaney suggests downloading articles, putting together an information packet and organizing a meeting around the issue at your job, church or school. The organization UNICEF offers comprehensive reports about the impact of AIDS on African children, available free for downloading at unicef.org/publications.

3. Donate funds. There are many humanitarian organizations dedicated to assisting children who have been orphaned by AIDS. You can sponsor a child or a family, or make a donation to initiatives that better a whole community, like building a school or providing AIDS education. Contact these organizations: Hope for African Children Initiative, (703) 807-1264, hopeforafricanchildren.org; World Vision, (888) 511-6598, worldvision.org; Save the Children, (800) 728-3843, savethechildren.org; Care, (800) 521-2273, care.org; Plan, (800) 556-7918, plan-international.org.

Jeannine Amber is a frequent contributor to this magazine. Next month she reports on the plight of girls kidnapped and forced into sexual slavery by guerrillas in northern Uganda.

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