In Summary
  • He also sits on the board of the Gifted Community Center which empowers the youth with disabilities to fend for themselves.
  • Controlling his bladder is still an issue, and he says that he has suffered professional discrimination because of his condition.
  • “I had to wear diapers because long lectures wouldn’t allow me to step in and out of lecture rooms. I visit the toilet more than fifteen times to date.”

It’s every mother’s desire to give birth to a healthy baby. But this is not always fulfilled as some babies are born with conditions that can be life threatening.

Ever heard of spina bifida?

According to the National Institute of Neurological Disorders and Stroke, spina bifida is a congenital anomaly where the spinal column does not develop normally during the first weeks of pregnancy.

This causes permanent damage to the spinal cord and nervous system, and can result in paralysis of the lower limbs or problems with bowel and bladder function.

When Mr Robert Nyakundi, 34, was born at Mater Hospital, he was diagnosed with spina bifida cystica which saw him undergo a delicate surgery, followed by incubation when he was only three days old.

His condition presented a tremendous initial shock to his parents and they developed a sustained fear for Mr Nyakundi’s future.

Luckily, his father was in the medical department in the Kenya Defence forces hence he got his son the best neurologist to handle his case. But this became short-lived.

“I could not sit straight and I started slouching but not even my parents knew why,” he said.

In an interview with Nation, Mr Nyakundi opened up about his challenging upbringing, bullying and stigmatisation from both his peers and society.

BULLYING

In primary school, he noticed that he was slower in physical activities. But the worst was having to visit the toilet more frequently than others, something he thought was normal at first.

“During a test in Class Five, I wanted to go to the toilet, but my teacher insisted that I finish the test first. I wet myself unknowingly, and I became the school’s laughing stock. That ordeal affects me till date,” he says.

Mr Nyakundi admits that the ostracisation and bullying from his peers started then, going on all through campus, leaving him psychologically traumatised.

A series of ordeals followed him. In Class 7, his calf muscles began to degenerate. He lost balance and fell. He has been limping since, despite taking B1 and B2 vitamin nerves continuously to boost his nerves.

Curses and witchcraft became cliché terms used in gossip by Mr Nyakundi’s friends and neighbours' in trying to explain his condition.

Spina bifida is permanently disabling and a poor community attitude casts a dark shadow upon the lives of those living with it.

The defect, according to the World Health Organization, has been shown to exist for more than 1200 years.

It falls under the broader category of neural tube defects. The neural tube is the embryonic structure that eventually develops into the baby's brain, the spinal cord and the tissues that enclose them.

 “I became rebellious against my father even as I struggled to fit in. I later joined Moi University to study psychology in a bid to help me understand what was wrong with me,”he says.

Apart from doing six academic researches on topics of social sciences and development, he has also delved into areas of gender mainstreaming and reproductive health development. He now holds a doctorate degree in sociology and a masters in international development.

Mr Nyakundi, who is now a strategic planning consultant on climate change adaptation and mitigation planning, has taught in several universities.

He also sits on the board of the Gifted Community Center which empowers the youth with disabilities to fend for themselves.

Controlling his bladder is still an issue, and he says that he has suffered professional discrimination because of his condition.

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