Parents of children with cerebral palsy (CP) in the coastal region are decrying widespread stigma, deep-rooted cultural misconceptions, and the overwhelming financial burden of raising children with special needs.
CP is a neurological disorder that affects movement and muscle coordination. It is one of the most common physical disabilities in childhood.
Mary Nyaboke, a mother of a CP child, explains that some people still hold the belief that the parents have sacrificed their children to get rich through sorceries. “The stigma that you face as a parent with a CP (child) is very high because people especially in the coastal region, will start saying that you have given your kids’ maybe to get wealth or the child is a demon,” stated Nyaboke.
She noted that the stigma is overwhelming as they struggle to make ends meet to take care of their children. “It’s very expensive to take care of these kids. There are diapers, special diets, and medication. Even visiting a paediatrician, you have to pay a lot of money,” she explained.
Besides stigma, Nyaboke noted parents grapple with the high cost of care, including diapers, specialized diets, medication, and therapy, adding many are forced to travel to Nairobi to access specialists worsening their financial strain.
They also decried high fees at special schools and appealed to the government to establish more special schools for CP children. “You’ll find that the few schools that are in Mombasa for CP and autism are very expensive for parents to pay compared to the other schools,” said Nyaboke when they launched a foundation on CP.
Nyaboke and her husband, Felix Akach, founded the Jayden Cerebral Palsy Giving Hope Foundation-—named after their son-—to support parents facing similar challenges.
One of their beneficiaries is Christine Mutiso who has an 11-year-old son with cerebral palsy. Her life took a sudden turn when she gave birth. She was forced to leave her business at Kongowea Market to take care of her son.
Florence Kaschana, a parent, gave birth normally, but three days after delivery, her son was diagnosed with jaundice and underwent an exchange transfusion. “The doctor advised me he may be normal or would be disabled. ‘’ I urge parents to be patient with their children; let’s not give up,” said the widow.
By Sadik Hassan
