The Sunday News
Amanda Florence Ncube
NDUMISO Ncube (30) from Emakhandeni suburb in Bulawayo was born with a rare disease and doctors say the only other known case in Zimbabwe is a white person from Mutare. Diagnosed with cystic fibrosis at the age of seven, Ndumiso has been in and out of hospitals locally and in South Africa.
Since 2013, he has been visiting a hospital in Johannesburg, South Africa every month where he is admitted for two weeks after every three months while receiving treatment. Thanks to the doctors in that country who are now using his case to find answers to cystic fibrosis, he is now receiving free treatment.
So deadly is the disease that doctors estimate that children diagnosed with it live for a maximum of 18 years. But Ndumiso is a fighter; he has defied all odds and gone on to live for 30 years.
“Cystic fibrosis is a life threatening, genetic disease that causes persistent lung infections and progressively limits the ability to breathe. In people with cystic fibrosis, a defective gene causes thick buildup mucus in the lungs,” said a Bulawayo pediatrician, Dr Mary Nyathi.
“Cystic fibrosis comes in so many ways but the most important things to note are the repeated chest infections, children will not be able to digest their food as the pancreas, which produces digestive enzymes is affected and as for Ndumiso we had to buy his from Botswana,” said his former pediatrician, a Dr Nyathi adding that they have not diagnosed anyone with cystic fibrosis after his case.
In the United States, about 30 000 people are living with cystic fibrosis and 75 percent of them are diagnosed with it at the age of two. Ndumiso’s life has been that of struggles both at home and school.
It all started in 1986 when he fell sick just two weeks after his birth. There on, he was always in and out of hospitals. He visited many doctors who put him on countless medications as they struggled to diagnose his problem.
When he was four months, he was admitted at Thorngrove Hospital where he spent three days in isolation undergoing TB treatment.
“After a week Ndumiso was born, we noticed that his digestive system was not functioning well as he did not swallow his food well but instead he would throw up all of it,” recalled his mother Simangele Nzangane in a low voice as if she blames herself for his son’s condition.
“We would take him to hospital but the doctors could not point out exactly what was his problem, we even tried traditional healers and sometimes he would drink herbs but to no avail.
“Ndumiso used to experience chest pains and coughed a lot. This made doctors to suspect that he was suffering from different diseases like TB, heart disease and HIV,” said his aunt, Prisca Ndlovu.
As his condition deteriorated, doctors took him for further medical tests including HIV but they all came out negative.
At school, Ndumiso faced more challenges as his peers discriminated him. Due to his health problem, he was shorter than his peers, had a swollen stomach, almost resembling a child suffering from kwashiorkor and sometimes he would cough continuously.
“I remember some of the times when I received phone calls from Mtshingwe Primary School (in Emakhandeni) asking me to come and take Ndumiso home when he wasn’t feeling well,” recalled his mother Nzangane.
At the age of seven, his paediatrician referred him to South Africa for further examinations.
“I was seven years old when I first heard I had cystic fibrosis so I didn’t know what they were talking about. But when I grew up, they told me about the disease. I felt bad and it was like the end of the world,” said Ndumiso struggling to hold his tears.
He recalled how he used to imagine himself as a doctor, but all these dreams were shuttered. Many times he had to console himself to be strong and hoped that one day all will be well.
Though Ndumiso has managed to defy the odds but this disease has also affected his academic life.
He had challenges completing his final Ordinary Level examinations which have also contributed to him not finding a proper job as he did not finish writing his exams.
“I still remember when I had attacks during my lessons at Luveve High School. I would spend two weeks at Mater Dei Hospital even during the time when I was writing my O-level and sometimes even more. The hospital became my second home but I eventually adapted,” recalled Ndumiso as he stopped for a second trying to regain his strength after coughing.
His family faced a lot of financial problems to an extent that his doctor appealed to the Ministry of Health and Child Welfare for assistance towards meeting his medical bills.
“The enzymes to replace Ndumiso’s pancreatic enzymes were bought in Botswana with the permanent secretary’s help. He was a Government patient,” said Dr Nyathi.
While the family was happy that doctors in South Africa managed to diagnose Ndumiso’s problem, their troubles are not over.
Ndumiso visits doctors in South Africa every month and is admitted for two weeks in hospital while receiving medication.
His family has to meet his travel, food and accommodation expenses which approximately sum up to R3 000 as he now receives free medication.
But this does not worry Ndumiso who has big plans for his future.
“I am happy with my life the way it is. I am hoping that God will bless me with a life partner and a child,” he said with a smile.
“Currently, I am self-employed. I have a small phone shop and I also sell Tupperware to make a living and also to pay for my medication in South Africa. I cannot be employed by anyone because of my condition and the fact that I am constantly admitted in South Africa for two weeks,” he said.
l Amanda Florence Ncube is a Part II student in the Journalism and Media Studies Department at the National University of Science and Technology.
