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Saving Lives in South Africa

Be the Change and Serendipity

By Jan Gillis ('07)

A Hamburg, South Africa, preschooler's AIDS ribbon drawing.

A Hamburg, South Africa, preschooler's AIDS ribbon drawing.

Few people would speak of serendipity and the AIDS crisis in South Africa in the same breath. After all, the South African HIV/AIDS epidemic is considered one of the most severe in the world. It is ravaging the country's population with alarmingly high rates of HIV infection, leaving hundreds of thousands in need of antiretroviral therapy and faced with a government that has received criticism for being negligent in handling the health crisis.

Nonetheless, a JMU alumna, a professor and students who are involved in fighting the epidemic there are convinced that serendipity can exist even in grim reality and offer persuading proof that in a quest to better the world, good fortune can indeed be found seemingly by accident.

An auspicious chain of events begins

For JMU health science professor Debra Sutton an auspicious chain of events was set into motion in 2005 when she received a phone call from an old friend at Duquesne University. He was organizing his first Study Abroad program, a visit to Cape Town, and wanted advice from Sutton, who has organized many such programs. "I told him to let me know if he thought it would be a place I would be interested in going," Sutton remembers. When her friend returned to the states, she received his hearty endorsement for her to plan a similar trip.

Among previous Study Abroad trips Sutton had conducted were several to Trinidad and Tobago, trips that had an HIV/AIDS prevention focus. Well aware that South Africa had the highest rate of HIV/AIDS in the world, she embarked on a path that would lead to a most unexpected and welcome contact -- a meeting she terms as simple, undeniable fate.

'Everything is connected.' -- Dr. Debra Sutton

As she began contacting universities in Eastern Cape and Western Cape provinces in South Africa, filtering through the responses and doing further research, she came across a blog of four Johns Hopkins University students who had recently been to Cape Town. "They wrote about their visit to the Desmond Tutu HIV Centre at the University of Cape Town, the Kidzpositive Family Fund and Dr. Paul Roux," says Sutton. Intrigued, she investigated the Web links for each.

Roux, director of pediatric medicine at the University of Cape Town and Groote Schuur Hospital's pediatric HIV/AIDS service, is co-founder of Kidzpositive, an organization dedicated to improving the health of HIV-positive children in South Africa. Roux responded immediately to Sutton's e-mail inquiry and acquainted her with the Positive Beadwork Project, a Kidzpositive initiative. The project allows mothers and grandmothers who are at the clinic while their children are hospitalized and treated to craft beadwork projects, which they sell. The money the women make from these crafts pays for transportation to and from the hospital and supports their families with food and housing. "In U.S. dollars, their income seems small, but it goes a long way in improving the lives of families affected by HIV/AIDS," Sutton explains. Just as important, the work offers families dignity and pride, scarce luxuries in a society that can at times seem dominated by disease, shame and death.

A Keiskamma Art Project pillow cover, sewn by an HIV-positive woman in Hamburg learning skills to earn income.

A Keiskamma Art Project pillow cover, sewn by an HIV-positive woman in Hamburg learning skills to earn income.

Roux encouraged Sutton to include a visit to the Groote Schuur Hospital in Cape Town to see their work firsthand. Learning about Roux's unique and successful charitable efforts prompted her to investigate further possible destinations for her program. As she continued to line up prospects, she found herself sitting at the computer one night in fall 2006. "I decided that I would Google South Africa AIDS charities in Virginia," says Sutton, explaining what would prove to be the most fortuitous turn of events in her plans.

25:40 and South Africa's children

An organization known as 25:40 was at the top of her search results. The group's special focus is on South Africa's children -- a staggering 1.1 million -- orphaned by the HIV/AIDS epidemic. As she investigated its Web site, she found that the organization supported Kidzpositive, the work she had already learned about from Roux. It was a sure sign to Sutton that she should get in touch with the nonprofit organization's directors, Alec and Amy Porter Zacaroli of Fairfax Station.

Sutton admits she wasn't prepared for what she discovered next. When Amy Zacaroli returned her phone call she said, 'Well, you know, before we talk any more, just let me tell you that I am a JMU graduate!"

"I just knew it had to be," Sutton says, affirming her conviction of the serendipitous nature of her plans. Equally sure that their contact was the outworking of destiny, Zacaroli ('88) says, "It was like we were meant to find each other."

25:40 pursues a twofold mission: help the children in South Africa get access to health care and a good education, and raise awareness in the U.S. about the impact that AIDS and poverty have on children that they consider neighbors.

25:40 pursues a twofold mission: help the children in South Africa get access to health care and a good education, and raise awareness in the U.S. about the impact that AIDS and poverty have on children that they consider neighbors.

A journalism major at JMU, Zacaroli honed her writing skills at The Breeze. Then after a decade-long career as a journalist, she decided to stay home with her growing family. Husband Alec spent the first 10 years of his life in South Africa. In early 2003, his best friend from childhood visited the Zacarolis. His friend's wife, a documentary filmmaker, showed the couple a film she had made about an orphanage in Cape Town that takes in HIV/AIDS infected children.

A life-changing moment

"It was the most heart-wrenching thing to see children with scabs all over their faces trying to live a normal childhood. They were so sick, and there was no way to treat them," Zacaroli remembers. Up until the early '90s, while the rest of the world was getting treatment for the disease, South Africa did not allow antiretroviral drugs, known as ARVs, in the country. The Zacarolis were watching images of children who would die before they reached 5 years of age.

The images changed the Zacarolis' lives and in time would prove to be the catalyst for change for hundreds who were more than 7,000 miles away in South Africa. "We couldn't turn our backs," Zacaroli says. The impetus came at a time when she and Alec were both "searching for what we were really on this Earth to do," she explains. Coincidence? More like inspiration from above according to Zacaroli. "We thought about it and prayed about it," she says.

They took inspiration for their decision to help South African children survive HIV infection from Jesus' words in Matthew 25:40, "I tell you the truth, whatever you did for one of the least of these brothers of mine, you did for me." They would pursue a twofold mission: help the children in South Africa get access to health care and a good education, and raise awareness in the United States about the impact that AIDS and poverty have on children that they consider neighbors.

Thus, 25:40 was born.

The infant organization was piloted by a couple ready to put their compassion into action, even though it would be a journey into the unknown. On one hand, it was a voyage into the complex and challenging world of fundraising, annual reports and nonprofit management for which they had little, if any, experience. On the other hand, it was walking a path determined by a higher power. "We just keep growing. We haven't really had any failures. There are no doors closing, only doors opening. So I really think for now, this is what we're supposed to be doing," Zacaroli says.

Zacaroli visits a 25:40 project with volunteers and South African children.

Zacaroli visits a 25:40 project with volunteers and South African children.

Their journey also led them to the intersection with Sutton's own educational efforts and plans to make a difference in the world -- to Be the Change.

Serendipity in the midst of an epidemic

The contact with Amy Zacaroli cemented Sutton's hopes for establishing a real JMU connection with those in South Africa fighting the epidemic. The auspicious beginnings of Sutton's Health 490 class, HIV/AIDS Prevention in South Africa, came to fruition in May 2007 as 10 students participated in the course, seeing firsthand the effects AIDS has had on South African communities and the efforts under way at the Desmond Tutu HIV Centre and the Centre for the Study of AIDS at the University of Pretoria to curb the epidemic. Participants also traveled to Robben Island and participated in a safari at one of South Africa's wildlife preserves.

Sutton is now planning two more trips to South Africa. In May, she will take 12 students to the Western Cape. Then, in June, 10 more students will travel with Sutton to the Eastern Cape where the Zacarolis concentrate their organization's efforts in Peddie, a vast rural area with scattered villages. Sutton is excited at the prospect of dovetailing her students' efforts with those of 25:40, which has taken a grass roots approach to accomplishing its mission. Peddie is a place where there are no orphanages. The clannish, family-oriented culture of South Africa projects a negative connotation onto the word "orphan" since the strength of family ties has traditionally obligated family members, however distant, to care for their own. But the devastating nature of AIDS has left gaping holes in this culture.

It is common for volunteers to find children who are suffering from pneumonia, tuberculosis and other infections cowering in their homes either already orphaned or with dying parents and afraid to be seen for fear of the prejudice surrounding their condition.

Finding those who need help

To combat the stigma and effectively reach those in need, 25:40 uses AIDS monitors in each of Peddie's 30 villages. In most cases the monitors themselves are HIV-positive but have found the health care they need and have been educated about living with AIDS, preventing transmission and how to take ARV medication. The monitors are hired to go door-to-door in their own villages to find those who need help. "It's empowering the people that live there," says Zacaroli of the approach.

During their 17 days in South Africa, Sutton's students will accompany these AIDS community monitors as they walk for miles a day looking for children who have not been brought to the clinics and pregnant women who have not had treatment. She prepares them beforehand: "I tell my students that when we go out to clinics and townships, and especially in rural villages, they will not see very many people their age -- many of them are dead."

Miracles come at a cost

Indeed, a generation has virtually disappeared in South Africa with only their orphans as a legacy. And it is a doomed legacy unless compassion is more powerful than disease, ignorance, prejudice and apathy. "In the United States, it would take you a long time to find one person that personally knows someone who died of AIDS. In South Africa, everybody knows someone who died of AIDS, and for some people, their whole family has died of the disease," explains Sutton. The work offers JMU students a chance to see Be the Change in action -- witnessing how the lives of those who might otherwise be doomed by HIV can be drastically changed. As Sutton says, "Before you think it is all gloom and doom, let me tell you it is not."

Pregnant women who receive ARVs cut their chances of transmitting the disease to their unborn children by 90 percent. For the children already infected with HIV, the drugs also offer real hope. "If children receive ARVs and are able to stay on the medication, there is every reason to believe that they'll have a good quality of life -- HIV can be a medically managed disease," Sutton explains. "In effect, it's a miracle."

Unfortunately, it's a costly miracle. "On average, an AIDS patient in the United States with insurance will incur $1,200 a month out-of-pocket expenses for their treatment. Philanthropists world over and the South African government have been able to significantly reduce the cost of HIV treatment in Africa," Sutton explains.

She's convinced that the minimal cost in Western terms makes a difference of global proportion. "South Africa's population has to survive," says Sutton. She crafts her Study Abroad program to make sure students get the point. The safari experience she incorporates into the students' visit to South Africa is not just a chance to see exotic animals up close in their natural environment; it is also a lesson in conservation. Traveling through protected habitats, students immediately make the connection that South Africans are shouldering the responsibility of preserving these natural oases of diversity, preventing the decimation of elephants, leopards, lions and other wildlife. "You'll hear students say, 'Hey, what if people weren't here to protect these animals? They'd all be gone. My kids would never be able to have this experience,'" Sutton remarks.

Something good from something bad

Equally compelling is the visit to Robben Island, where Nelson Mandela spent almost 27 years in the maximum security prison. Today former guards and prisoners live there together, showing solidarity against the destructive ideology of the past and exemplifying the hope that exists after apartheid. "They have decided to make it work," says Sutton, "that if the terrible hostility against each other continues, then nothing has changed. They want to show not only their fellow South Africans, but also the world, that something good came out of something bad." The lesson is not lost on students who regularly mention their visit to the island as one of the most powerful learning experiences of their Study Abroad trip.

In fact, the ability of South Africans to forge a new spirit of conciliation and Be the Change for their troubled nation is a source of inspiration to all those who witness it. Zacaroli has become devoted to her South African neighbors: "The people there are so amazing. Even though their problems are life threatening, they are full of joy, hope and outward love for others."

So what do Sutton and Zacaroli hope for those who avail themselves of the opportunities to help South Africa?

25:40's efforts included building a home for Granny Jubese, (second from left) with Sister Mavis Zita, Amy Zacaroli, Sophie Zacaroli, and Becky and Catherine Collins.

25:40's efforts included building a home for Granny Jubese, (second from left) with Sister Mavis Zita, Amy Zacaroli, Sophie Zacaroli, and Becky and Catherine Collins.

Zacaroli is thoroughly convinced that reward and fulfillment come from connection with other people, not possessions or titles. "They really appreciate us. Everyone is saying 'thank you' all the time. They take time to be with you, and that is a really, really rewarding personal connection," she explains. Perhaps most telling of her own Be the Change spirit, is that she is not proprietary about channeling charitable action to 25:40. "We want to help the children in South Africa but also [want] to open hearts here. People have talents, passion and energy; and we want people to find the gift they have and channel that into something good. It may not be 25:40 or kids in South Africa, but everyone has a gift and opportunity for something. Each of us must follow our heart."

Sutton wants her students to understand a profound lesson as well. "Everything is connected. That's a lesson I've been fortunate to know for many, many years; and one I want my students to learn," she says. So Sutton makes sure that each student preparing to go on their Study Abroad trip to South Africa hears the story of her meeting Zacaroli. Both women are convinced that the chance to change the world can come from a seemingly random occurrence, a serendipity of destiny and human goodness.

About the author

Jan Gillis ('07) coordinates JMU's "Be the Change" campaign and is the editor of MadisonOnline. MadisonOnline welcomes comments in response to Madison's online content as well as story ideas. Send to gillisjc@jmu.edu.