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November 17, 2018

Cerebral palsy in children costs mums their jobs

Mothers feed children with cerebral palsy disorder during a forum at Ukunda to train caregivers on how to handle such special children. /CHARI SUCHE
Mothers feed children with cerebral palsy disorder during a forum at Ukunda to train caregivers on how to handle such special children. /CHARI SUCHE

"In Kenya, raising a child with cerebral palsy will either force one to be sacked or quit their career to take care of the child. No house help is ready to stay with a child perceived to be cursed," says Rose Atieno, mother of a two-year-old boy.

According to the World Health Organisation, every time 1,000 children are born in Third World countries, including Kenya, four are found to be with cerebral palsy.

The full-time care the children needs means that mothers have to quit their jobs and take care of such special children.

Atieno, a single mother, now stays with her little boy, who can’t feed himself, let alone walk or touch an object properly, because he was born with cerebral palsy, an incurable condition that is thought to be caused by brain damage before, during or soon after birth.

Before her son was born, Atieno was working with Tours and Safari, a travel company at Ukunda, and earning at least Sh45,000.

"My life crumbled down after the birth of my son. It took me four months after delivery before I found out that my hopeless child, who had taken dozen of drugs not knowing what he was suffering from, had cerebral palsy," she said.

At first, Atieno realised that something was wrong with her child as he wasn’t moving or following the sight of objects.

"I went to different specialists in Coast but all was in vain, up to four months on, then a certain peadiatrician recommended me to a facility where my son would start exercising. At the facility, I was taught more on cerebral palsy," she said.

Atieno thought she had done something wrong, blamed the doctors too who helped her on delivery but at last, she found hope after meeting fellow parents whose children were in a worse state than her son.

"I was hopeless, in denial, angry and had a lot of confusion. I was going for exercises three times a week so that at least my child could be able to move his right hand which looked like it was paralysed."

In Coast region, any disability has been taken as a curse, witchcraft or sins a parent committed.

To Atieno, the experience is familiar. "There was a time my child went to the church with a friend and the pastor asked that I also go and repent my sins. When you walk in the streets with such a child, people stare at you like a devil."

In Kwale county, such children are taken as a fault by parent who put them in such situation voluntarily as a source of income.

This is worse when you have more than one child with the condition, especially when you’re rich.

MYTHS PERSIST

Mzee Chikaya from Tsimba village in Matuga subcounty, a herbalist, says such children are as a result of parents who use evil means to earn wealth.

This belief has resulted in parents hiding their children born with the disorder, which in turn worsen their condition as they lack special skills that enable them to live like other normal children.

Dr Geofrey Momanyi, a therapist at Msambweni Referral Hospital who is also a volunteer at Cerebral Palsy Ukunda, says parents hide such children due to lack of knowledge on cerebral palsy and support from family.

"Some consider the situation as a bad omen of a curse, while there are few institutions in Kenya able to provide special care and education to such children," he said.

Cerebral Palsy Ukunda facility attends to at least 37 children, providing them support, therapy and rehabilitation. After Atieno quit her job, she began working as a volunteer at the facility where her son gets therapy.

The aim of the facility is to educate caregivers about the disorder together with therapy to the children.

Momanyi called for more awareness among the public about the condition, asking the government to put to work the policies it passed to protect the rights of people living with disabilities.

"Children born with this condition also have a right to education. And as we can see, there have been locked inside while their able siblings are given a chance to pursue their educational desires," he said.

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