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Ever since Elsie Sithebe’s daughter died of HIV and AIDS, she has been working to help others learn how to keep from getting the disease or cope with its effects. (MCC Photo/Silas Crews)

Ever since Elsie Sithebe’s daughter died of HIV and AIDS, she has been working to help others learn how to keep from getting the disease or cope with its effects. (MCC Photo/Silas Crews)

Loss moves mother to serve those with HIV and AIDS

Lucas Klassen and Linda Espenshade
May 24, 2013

JOHANNESBURG, South Africa -- Elsie Sithebe knew nothing about the virus that killed her daughter, but the emotional pain of the loss kindled a fierce determination to learn more and tell others so they wouldn’t have to suffer as she had.

In 1998, Sithebe’s 19-year-old daughter, Susan, developed a severe cough. Sithebe brought her to a clinic, where Susan was given medicine for tuberculosis. Six months later, it appeared that Susan had fully recovered.

But in January 2000, Susan collapsed in school. Over the next three months, her health did not improve despite taking medicine.

“She was becoming weaker and weaker each and every hour until she could not talk,” Sithebe said. “I didn’t know what to do. Even the neighbors didn’t know what to do.”

Sithebe took Susan to the hospital, where she learned that her daughter would die soon of AIDS.

“After that, I found that I didn’t know anything about [HIV and AIDS],” Sithebe said. “I didn’t know what to do when somebody is sick. I was just scared of infection. I said to myself, ‘I still have other children behind, so how can I help them?’”

A year after Susan’s death, Albina Maleka, a retired nurse with vision and energy to help families who were dealing with HIV, the virus that causes AIDS, began a home-based care organization called Helping Hand. Based in her garage, Helping Hand provided basic nursing care to its clients, distributed food parcels and monitored treatment of the disease.

Local hospitals were seeing an influx of patients, resulting in inadequate treatment. Patients were being discharged long before they had begun to rebuild their strength. There was an obvious need.

Sithebe became involved with Helping Hand as a volunteer counselor for people living with HIV and for those caring for them. Through the organization, Sithebe learned about HIV – information that she shared door-to-door after long work days, ensuring that other families didn’t have to experience what she did.

 “I know what is their pain,” Sithebe said. Her own experience allowed her to “get in a family’s shoes and feel what they feel.”

People needed to recognize the symptoms, Sithebe said. She explained how to prevent the disease and how to avoid spreading it. She encouraged those with HIV to be honest about their status so they could receive emotional support and share it with others living with the virus.

By 2005, Sithebe was on staff with Helping Hand. Recognizing the need for assistance in managing the rapidly growing organization, they turned to Unsung Heroes, a Mennonite Central Committee (MCC) partner in Johannesburg. Unsung Heroes specializes in strengthening community-based organizations through mentoring.

“What we have seen is that community-based organizations start out with a vision, but not necessarily the skills to manage an organization,” said Joan Alty, MCC representative for South Africa, Swaziland and Lesotho with her spouse, James Alty. They are from Howden, Man. “This support provides the understanding so that the organization is able to reach its goals. We have seen the difference they make to organizations such as Helping Hands.”

From 2007 to early this year, Unsung Heroes worked with Helping Hand to establish financial, clerical, staffing and administrative structures. Unsung Heroes continues to partner with Helping Hand, but MCC’s support is now being used differently by Unsung Heroes.

Today, Helping Hand has 24 staff members. Sithebe is the project manager, overseeing the care and treatment of 54 patients and coordinating after-school care for 310 children, most of whom are orphans or whose families are affected by HIV.

Helping Hand is challenged by its ever-growing patient list and number of children requiring after-school care. Funds are limited, the facility is small and staff turnover is high.

Despite the challenges, the staff remains optimistic.

“We are shining because of Unsung Heroes,” said Maleka. They can see the direct impact of their work – that the suffering of people like Sithebe is being reduced in the local community.