She watches the neighbourhood children running past her house on their way to school and returning again in the afternoon, talking excitedly about their first days at school.
Onkarabile Mamorobela would love nothing more than to join them, to play skipping games at break time and even to complain about how heavy her new schoolbag is. But the six-year-old girl from Hammanskraal, Gauteng, can do nothing but watch with envy as other kids live her dream.
Onkarabile has a big burden to carry – quite literally. The little girl is strapped to an oxygen tank that’s almost as tall as she is and can’t go further than the tree in her front yard if she stretches the extension cord. Without the tank, she’ll most likely die. And as young as she is, Onkarabile understands that, her mother, Tumelo, tells DRUM.
Her only child has suffered from respiratory problems all
her life, from bronchopneumonia shortly after birth and tuberculosis to primary
ciliary dyskinesia, a chronic lung disease. She’s been in an out of hospitals
and after her last three-month stint in October she was given a big oxygen tank
to take home to help her breathe. Her life depends on it, her mom says. “She
yearns to go outdoors and play with other kids and it rips my heart apart,”
Tumelo says, wiping away tears.
“I can see my child is hurting and it depresses me a lot.” Onkarabile was meant to start Grade 1 this year but there is no way she can endure the rough and tumble of the schoolyard in her condition, Tumelo (26) says. “I am really scared for her life. She has suffered a lot. I pray that with God’s grace she’ll be able to go to school one day.” Tumelo had to quit her job at a textile factory three years ago when it became clear that Onkarabile would need 24- hour care.
The two spend their days in their bedroom, sleeping or reading. And when the little girl yearns for fresh air, they wheel the oxygen tank outside and play diketo, the hand-eye co-ordination game played with stones.
It’s all a far cry from the life Tumelo had imagined for her daughter.
Onkarabile reminiscences about the days when she was well enough to go shopping with her mother. She hasn’t been able to go anywhere except to the hospital for check-ups since October.
When Onkarabile needs to go to the hospital she uses a mobile cylinder capable of providing oxygen for 24 hours. “We used to go shopping together a lot,” Tumelo says. “She loves beautiful dresses, skirts and shoes.”
Sitting in a tiny pink camping chair at home, Onkarabile nods enthusiastically. “I really love beautiful shoes and I want them. But with this machine I can’t go anywhere. And people will also stare at me.” The frail child often coughs and seems to struggle to breathe, even with the help of the machine. As she rubs her daughter’s back and fixes the tubes going into her nose from the machine, Tumelo tells of the strain Onkarabile’s condition has put on the family’s already stretched finances. The pair survive on the R380 monthly child grant they receive.
For the remainder, they rely on help from Tumelo’s mother, Maria, (46), and support from friends and neighbours. Her mom has been her rock, Tumelo adds. She hasn’t heard from Onkarabile’s father since the baby was six months old. “It’s been very difficult,” she adds. “Without my mother I don’t know where I would be today. She supports me emotionally and financially but sometimes if we run out of electricity, neighbours, church members and friends will come to our rescue. I don’t know how my child would have survived otherwise.” When they run out of power and have no money to get more, Onkarabile ihas to be hooked up to the mobile cylinder.
Once the oxygen supply in the tank is exhausted, the Jubilee District Hospital in Hammanskraal has to deliver a new one. The oxygen tank uses about R500 electricity every month, Tumelo says, and they simply can’t compromise on it as its Onkarabile’s lifeline. Tumelo says that even hospital visits are a nightmare with the cylinder. “Sometimes I cry because some of the taxi drivers refuse to let us in, complaining about the cylinder or the machine. Some think I’m carrying dangerous gas. “I don’t know what to do anymore. I am afraid of taking her to school because children can be naughty. I don’t know what might happen to her, what if they pull or cut off the tubes from the machine?” she says.
Onkarabile’s name means “an answer to my prayers” – but ever since she was born, her mom has said prayers for her every night. Tumelo was overjoyed when she was told she had a daughter after giving birth at Jubilee District Hospital. But her joy was short-lived. Doctors told her the tiny baby had breathing problems and she had to be kept in the hospital for two weeks due to bronchopneumonia.
She was later transferred to Steve Biko Academic Hospital where she was treated and recovered well. For three years she had no serious health issues – but then her breathing difficulties returned and she was eventually diagnosed with miliary TB, a type of TB that occurs when a large number of the bacteria travel through the bloodstream and spread throughout the body.
This is often an inherited condition that presents in childhood, according to Dr Vhutshilo Netshituni, a medical professional based in Polokwane. It’s difficult to say how long Onkarabile will have to depend on the machine for breathing. She could need it for the rest of her life. Miracles can happen, Dr Netshituni says, but if the lungs are badly damaged Onkarabile may not live a normal life.
Dr Netshituni says that it’s hard to say whether a lung transplant would work for the little girl. It all depends on the extent of the damage and her recovery over the next year or so. Dr Ziyanda Vundle, a community medicine specialist based in East London, says if Tumelo had miliary TB while pregnant and was not treated, it’s possible the foetus may have become infected since it spreads via the bloodstream.
“Otherwise children get infected after birth due to exposure to TB at home.” Miliary TB can take up to a year to treat, which is small consolation for the Mamorobela family, who might have to keep little Onkarabile home for the rest of the school year.
Tumelo is investigating the possibilities of her daughter attending a special school for children with disabilities in Johannesburg and a community member is assisting her, she says. And so for now, the closest she gets to freedom is watching the world pass by her window.
