Nearly 100 children living with life-threatening illnesses in Grahamstown have a guardian angel a brief, bumpy car ride away. Each day, someone who cares follows potholed roads to the homes of families in need of health guidance, encouragement and e’Pap.
Grocott’s Mail reporter, Daniella Favis, documented a day in the life of Eleanor Johnson, a Grahamstown Hospice nurse.
Eleanor chooses the neon pink house first. It stands prominent among rusted iron shacks, not only catching the eyes of passersby, but their ears too. Inside, lying in her mother’s lap, is a screeching infant with yellow eyes. Although her frustrated fists are the size of a newborn baby’s, she turned a year old last month. Thembela* has mitochondrial disease, which stunts her growth and upsets her liver function.
The doctors at Red Cross Children’s Hospital in Cape Town, where Thembela was born, were convinced she would survive only survive a few months. But at the age of one, she’s toddling around with the aid of a walking ring at a development clinic where she’s also learning to speak. “She can say 'Mama' now,” says Eleanor.
Aurelia* lives in another brilliant pink home, but this one isn’t so out of place, and neither is her disease. Aurelia was born with HIV. After her mother died and her father moved to Port Elizabeth, Aurelia’s grandmother became the person who fills her bottle with Oros and carries tissues in her pockets to wipe her granddaughter’s persistent snotty nose. She also became the person who ensures that Aurelia visits the clinic each month for her Antiretroviral (ARV) treatment, a treatment Eleanor confirms is regular, by examining Aurelia’s health passport.
But check-ups and donations of e’Pap, an immune-boosting nutritional porridge, are not enough any more. Social workers who are aware of two-year-old Aurelia’s circumstances are apprehensive about her grandmother’s age, and therefore the quality of her care. Eleanor scrunches up her face and puts her hand over her heart to protect it. Her Hospice car has carried her to more neglectful families than she can count, but sitting in front of her is a woman who looks after and loves a child that is not even her own. Eleanor promises to refer her to a Hospice social worker for a follow-up assessment.
Nonyameko* has not been as fortunate as Aurelia. Shortly after she was born, her mother left their house for the weekend, with only a yelling Nonyameko still inside it. Police were notified of the screaming and Nonyameko’s mother was jailed for child neglect.
She has since been reunited with her HIV-positive daughter, but Eleanor is wary of her care. Although Nonyameko was never left at home alone again, her mother tends to neglect her ARV treatment. At one point, she was without ARVs for four months.
As soon as ARV patients miss their doses, drug resistance becomes a likely consequence. However, Eleanor is pleased with Nonyameko’s health and left her two packets of e’Pap. She is also pleased that social workers from Settlers' Hospital have Nonyameko’s care in mind.
Khanyiswa* doesn’t need e’Pap. Instead, she is a seven-year-old who needs giant nappies. Khanyiswa was born with spina bifida disorder. Not only is a portion of her spinal cord protruding out of her lower back, and her right foot raw with an infected ulcer preventing her from walking more than a few steps, but she is also unable to control her bowel movements. Eleanor provides Khanyiswa with special nappies every two weeks in an effort to prevent her from having an embarrassing accident at school. This time she gets a packet of Easter eggs, too. Khanyiswa peeps her head around the doorframe.
“Enkosi,” she says, hiding half of her smile with her hand.
Nearly 100 children living with life-threatening illnesses in Grahamstown have a guardian angel a brief, bumpy car ride away. Each day, someone who cares follows potholed roads to the homes of families in need of health guidance, encouragement and e’Pap.
Grocott’s Mail reporter, Daniella Favis, documented a day in the life of Eleanor Johnson, a Grahamstown Hospice nurse.
Eleanor chooses the neon pink house first. It stands prominent among rusted iron shacks, not only catching the eyes of passersby, but their ears too. Inside, lying in her mother’s lap, is a screeching infant with yellow eyes. Although her frustrated fists are the size of a newborn baby’s, she turned a year old last month. Thembela* has mitochondrial disease, which stunts her growth and upsets her liver function.
The doctors at Red Cross Children’s Hospital in Cape Town, where Thembela was born, were convinced she would survive only survive a few months. But at the age of one, she’s toddling around with the aid of a walking ring at a development clinic where she’s also learning to speak. “She can say 'Mama' now,” says Eleanor.
Aurelia* lives in another brilliant pink home, but this one isn’t so out of place, and neither is her disease. Aurelia was born with HIV. After her mother died and her father moved to Port Elizabeth, Aurelia’s grandmother became the person who fills her bottle with Oros and carries tissues in her pockets to wipe her granddaughter’s persistent snotty nose. She also became the person who ensures that Aurelia visits the clinic each month for her Antiretroviral (ARV) treatment, a treatment Eleanor confirms is regular, by examining Aurelia’s health passport.
But check-ups and donations of e’Pap, an immune-boosting nutritional porridge, are not enough any more. Social workers who are aware of two-year-old Aurelia’s circumstances are apprehensive about her grandmother’s age, and therefore the quality of her care. Eleanor scrunches up her face and puts her hand over her heart to protect it. Her Hospice car has carried her to more neglectful families than she can count, but sitting in front of her is a woman who looks after and loves a child that is not even her own. Eleanor promises to refer her to a Hospice social worker for a follow-up assessment.
Nonyameko* has not been as fortunate as Aurelia. Shortly after she was born, her mother left their house for the weekend, with only a yelling Nonyameko still inside it. Police were notified of the screaming and Nonyameko’s mother was jailed for child neglect.
She has since been reunited with her HIV-positive daughter, but Eleanor is wary of her care. Although Nonyameko was never left at home alone again, her mother tends to neglect her ARV treatment. At one point, she was without ARVs for four months.
As soon as ARV patients miss their doses, drug resistance becomes a likely consequence. However, Eleanor is pleased with Nonyameko’s health and left her two packets of e’Pap. She is also pleased that social workers from Settlers' Hospital have Nonyameko’s care in mind.
Khanyiswa* doesn’t need e’Pap. Instead, she is a seven-year-old who needs giant nappies. Khanyiswa was born with spina bifida disorder. Not only is a portion of her spinal cord protruding out of her lower back, and her right foot raw with an infected ulcer preventing her from walking more than a few steps, but she is also unable to control her bowel movements. Eleanor provides Khanyiswa with special nappies every two weeks in an effort to prevent her from having an embarrassing accident at school. This time she gets a packet of Easter eggs, too. Khanyiswa peeps her head around the doorframe.
“Enkosi,” she says, hiding half of her smile with her hand.
*Names have been changed in order to protect the children's identities.
