Overworked grannies struggle to care for AIDS orphans

KAMPALA, UGANDA – Nakala Saye lives in a slum behind shops on Entebbe road, the busiest road in Uganda. She wears long dresses with a single black bangle on her left wrist. Her hair is short—only a few centimeters long. Her hands are worn and rough from years of working in farm fields. Her crow lines are deep, but the lines in her forehead betray decades of smiling. Her voice can be heard clearly over the buzz of the road as she reprimands the children under her care.

Nakale Saye, stands in her slum where she has lived for the past ten years. (Amelia Herrick | The Media School)

As she walks around her small compound on Kampala’s south side, children, like ducklings following their mama, follow her.

Grandparents raise seventy percent of the orphans in Uganda—an East African country that lost a generation of parents during the HIV/AIDS epidemic in the 1980s. Saye is one of those grannies and like most grannies, she finds it hard to provide for her children and relies on non-governmental organizations like the People in Need Agency (PINA) for food and medicine. NGOs mainly focus on children affected by the HIV/AIDS epidemic, but grannies also benefit from these organizations

Nakala Saye believes she is around 70. She has lived in her one bedroom house next door to her siblings for more than ten years. She was once a young farmer digging in the fields, but her age and health forced her out of that work. Most grannies spent their lives working the farm fields. Ninety percent of Ugandans work in agriculture and like Saye, and had no way of saving for retirement. In Uganda, the average age of retirement is 55. That’s when they lose their insurance, but don’t receive a pension.

Saye never married and has no children of her own. It wasn’t until the death of her half-sister from HIV/AIDS that she was inherited her first child. The HIV/AIDS epidemic has left 1.1 million children orphaned in Uganda.

She lines up her kids in front of her house on a Wednesday afternoon. (Amelia Herrick | The Media School)

Because her sister died in Saye’s home, it was assumed that she would care for one-year-old Nantumbwe Futumah. It is tradition that family is expected to take care of family. Futumah, now ten, has been under her care ever since.

And she’s been HIV-positive and taking antiretroviral drugs since birth.

Unable to hold any job that required her to leave the house, Saye started babysitting to make an income. Currently, she watches Habiba, Barbara Ronia and Semuga Abdu. The girls come and go each day as their parents drop them in the morning and pick them up in the evening.

Abdu, the boy, doesn’t come and go, however.

One day about three years ago his parents dropped him but never picked him up. She says she is now stuck with him because there is nowhere she can leave him. Orphanages are not available in Uganda.

She also watches countless family members each day without pay. She makes about 1,000 Uganda shillings (28 US cents) a day from childcare, sometimes more if the parent believes her work was exceptional that day.

Saye is a Muslim and starts every day with prayer. She then cleans the house and washes the clothes. Her biggest challenge is having enough food for everyone. When she has money she goes to the market a few hundred meters away, but she never

Semjga Abdu, Barbara Ronia and Habiba play outside under the daily supervision of Saye in a slum off Entebbe Road. (Amelia Herrick | The Media School)

crosses the road. If she needs something from the opposite side, neighbors will fetch it for her because both Saye and Futumah find it too dangerous to cross busy Entebbe Road. Saye only goes to market so she can benefit from the relationships she has formed from the shop owners. Sometimes the money is not enough and Saye has to beg. This is something Futumah cannot do.

Saye’s fondest memory was a few years back before she learned about PINA. She visited her now late mother in Jinja, for a family gathering. She couldn’t believe how generous everyone was to her. Jinja is a two-hour drive east of Kampala and the home of the source of the Nile. Various people brought her food and gifts. There was a lot of interaction with members of the community. This day made a difference in her life. She didn’t know people could be that generous to her. She feels that same generosity with PINA.

PINA works mainly with HIV-positive youth and aims to empower them and the adults who care for them. One of the founders, Namusoke Asia Mbajja, has dedicated her life to this work since 2008. PINA is a smaller organization that partners with bigger NGOs, such as The AIDS Support Organization and The National Forum of PLHA Networks in Uganda. Both organizations receive funding from the U.S President’s Emergency Plan for AIDS Relief.

Sitting in her house she rents from her brother, Nakale Saye sits with Habiba who she watches daily. (Amelia Herrick | The Media School)

PINA locates children in need, posts each child’s story on their Facebook page and asks for online donations. PINA receives local and international donations from private donors. A German who visited Uganda recently and met the family donated to Saye and Fatumah because she was moved by their story and wanted to sponsor Futumah’s school funds and uniforms.

This is Futumah’s first full year of School. Previously she could only attend classes when Saye had enough funds, usually only a few days a month. Futumah also credits PINA with supplying her with enough food to “grow taller” and to take her HIV medication that requires food.

Without PINA, Futumah wouldn’t be taking her HIV medications regularly. Futumah admits she didn’t take her medication regularly, and that caused her to miss school, plus she couldn’t help around the house. Saye wasn’t giving her daily medication due to the side effects Futumah was facing, it wasn’t until PINA came in and explained the importance of the drugs that Futumah took them daily. She has found a new appreciation for taking her drugs because they keep her healthy.

Futumah sits in her school yard. (Amelia Herrick | The Media School)

Only the teachers at her school knew she is HIV-positive until when a few teachers told a couple of students about her HIV status. Normally revealing a person’s status leads to discrimination, but not at Fatumah’s school.

HIV hasn’t affected her life as dramatically as it might have if PINA had not stepped in. She can’t remember a time she has been discriminated against or faced any stigma attached to HIV/AIDS. Normally students are outcasts in school and discriminated against because of their positi
ve status.

Fatumah also credits Saye with “raising her as if her mother was still alive.” She accepts Saye as her mother and calls her “mama.” She realizes her mother is growing older so she has started taking on more responsibilities. This is a normal transition as the grandparents are raising so many youth. Now she washes the clothes in the morning before school and sometimes helps with the cooking. She plans to take on more responsibilities as her mother ages in the future.

Surrounded by her peers at school, Futumah sits in a classroom where she has attended for the last year. (Amelia Herrick | The Media School)

In a crowded one room schoolhouse sat Nantumbwe Futumah. Her face is fresh with noblemishes or lines. Her pearly teeth pop

against her dark skin. Her skin is smooth and new. Her white hijab wraps securely around her face covering her hair. She doesn’t have any wrinkles. Her hands aren’t tough and worn.

The worn hands of Saye work to provide money to buy food. Her tired eyes work to supply strength and leadership. Her rough and sun blotched skin shows her age and dedication. All of this selfless service provides Futumah with the best life Saye can give her.