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
It’s all a far cry from the life Tumelo had imagined for her
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
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
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
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.