Mother and severely disabled boy struggle to survive

By Maria Kandjungu

AT the age of seven years – Gabriel Indongo still cannot walk, sit, eat or move on his own due to cerebral palsy, a condition that has also left him partially blind and with breathing difficulties. This week, Confidente sat down with Gabriel’s mother, Martha Imene, after she reached out to this reporter to hear the plight of her little boy.

According to his medical report, Gabriel suffers from cerebral palsy, secondary to kernicterus. Cerebral palsy or brain paralysis is caused by abnormal development or damage in one or more parts of the brain that control muscle tone and movement while kernicterus is a type of brain damage that can result from high levels of bilirubin in the baby’s blood.

Consequently, Gabriel has brain damage, hearing loss, problems with his vision and teeth and intellectual disabilities, among several disabilities.

His 36-year-old single mother says that her little boy, who has never known the joy of playing or running around, developed cerebral palsy a few weeks after birth, after the yellowing of his skin and other tissues was noticed too late.

“He was born on the 31 July 2013, he was fine. He moved his hand, he kicked. He was just fine. When we came home from the hospital, he would cry a lot, like he was in pain. After a week I took him back to the hospital and that is when the doctors told me he is too yellow and they put him in an incubator but he never came out the same,” Imene narrated sadly, while rocking her only son.

They spent a month and a half in the hospital, she recalls, and it was during that time she started noticing changes in the baby. “His arms were not moving properly, his arms and legs were getting stiff and then it just went down from there, I noticed he could not close his eyes. I would see all these changes while he is in the incubator and I told the doctor and that is when they told me ‘the yellow’ has gone to his brain and he will never grow up normal.”

While her son will always be a blessing, the last seven years have been long and hard.

“I got a job in 2014 while I left him at day-care, but he gets sick a lot. He can be in and out of hospital for even three consecutive months, so I was absent from work a lot. The work also required me to do night shifts, but I had nowhere to leave him at night and my boss did not understand. He told me I could not do day-shifts only. I lost the job after a year.”

She now tries to earn a meagre living doing hair at her shack in Okahandja Park to support her son, her 29-year-old visually impaired relative and another unemployed 21-year-old cousin who helps look after Gabriel.

“I plait [hair] from home mostly, unless someone calls me. But like this I make little money. People come saying ‘I only have this much money.’ I would have one customer per day and some days I don’t have anything. When I make a little money, I must buy his nappies or milk because he doesn’t like other food, they cause his stomach to pain.”

While she receives support from government in the form of the N$250 child disability grant, it is simply not enough to cover her son’s basic needs.

“The hospital gives us 50 nappies but sometimes, like last month, you go there and they tell you the nappies are finished, even then those 50 nappies are not enough to last a month. So, the N$250 is usually spent on extra nappies. It is not that I am not thankful, it is just honestly not enough. I need to buy food, water, and all the other things. We do not get Harambee food. We have not gotten any of the donations. We are always skipped because we apparently get a government grant but that N$250 is spent on his nappies and milk alone.

“Our councillor has only been here once, years ago when I asked him to help me get a wheelchair for my son. He didn’t help me and never came back. I managed to get a wheelchair last year because a person saw me carrying him in the hospital.”

Imene has called on the public to help her with a job to be able to better take care of her family. She is looking for a school that is equipped to help children of his condition.

“I have 19 points in Grade 12. I want to do Namcol but I can’t afford it. I need a job, but I can’t just leave him with anyone and I can’t leave him with my cousin all the time because she is also looking for a job. If there is a school out there that assists children with his sort of condition I would love to send him, then maybe I can get a job to improve our lives.”