Pain, hope for children living with cerebral palsy in Buuri

Children suffering from cerebral palsy at a free medical camp in Ojolla Sub-County Hospital, Kisumu. [Rodgers Otiso, Standard]

At the Deputy County Commissioner's (DCC) compound at Kiirua in Buuri, Meru, tears flowed freely as the abandonment and neglect of children suffering from cerebral palsy (CP) was exposed.

Young people with cerebral palsy recounted their painful experiences, and stories were told by others about the mistreatment of those with the condition.

In a community where stigma associated with cerebral palsy is strongly entrenched, the picture that came out was a dejected, neglected lot as the community remained at pains to accept them as they are, and to take proper care of them.

Instructively, it also came to the fore that some of the culprits for their travails include their own parents and other kin.

Also, the fact that some parents and members of the communities still associated the condition with curses and other unreasonable traditional beliefs.

Take, for instance, the case of Stan (not his real name).

Stan, who is now over 20 years old, was abandoned in a hospital at birth by his parents when they realised his condition.

He, obviously, missed out on important childhood events -no parents to name him, no mother to breastfeed and cuddle him, and to love him.

"He had no name, no address, no parents," said Dorcas Mugambi, who was later to become involved in catering for him, including in the provision of therapy and other needs.

Though Stan is still under institutional care, Mrs Mugambi has in additional to other assistant been involved in providing him with the appropriate wheelchair to ease movement.

"He is now living a better life," Mrs Mugambi, of the Dorcas Society which works with cerebral palsy parents and other stakeholders, said.

James (also not his real name) has no permanent home and you will see him struggle to go into hotels, entertainment joints and other premises, begging for coins.

He cannot speak coherently as you would expect, but Tracey Kaimuri, a road side trader in Meru town, said she has known him for a long time.

"He was just a small boy when I first saw him but he is now taller but thinner. We drop coins into his bowl and a friend of mine who runs a hotel gives him lunch. But I don't know where he sleeps," said Ms Kaimuri.

At the DCC compound, where some of the young people with cerebral palsy, parents and other stakeholders met during the release of a report Knowledge Attitude and Practices Study on Cerebral Palsy in Buuri Constituency, undertaken by Dorcas Society in partnership with Njeri Maria Foundation and prepared by Ipsos Africa Center for Development Research and Evaluation, many eyes became wet as sad stories were told.

When Winfred Bula became pregnant, she was happy and expected to have a healthy and bouncing baby but seven months into the pregnancy she developed high blood pressure.

She was put on medication, and a lot of rest was recommended.

"But the pressure persisted, and I had to undergo a cesarean. My baby was put in the nursery for a month," Ms Bula recollected.

The baby was 1.5kg when she was discharged, but the baby could not suckle, forcing Bula to resort to squeezing the milk into a bottle to feed him.

Hospital visits became frequent when complications developed, and at 10 months the baby fell very sick and mother and baby had to be admitted.

"Tests showed she had a blood infection, but despite treatment the situation persisted; a CT scan was done. The baby could not stay upright," she said.

Upon diagnosis of cerebral palsy, Bula said therapy was initiated, but she could not afford the charges since she was unemployed.

Due to therapy, her baby was able to sit in a padded basin, she said.

At seven, despite the Covid-19 restrictions, she traveled to Nairobi with her son to seek further treatment.

In 2021 her sister made her aware of a specialist who used to visit a children's home in Meru and who catered for children with the condition.

"The doctor performed an operation on the left and right hip joints. He gradually improved and was able to stand, with support," Bula said.

She is among many parents who have received support from Dorcas Society and she says her son who uses clutches, attends therapy sessions twice a week and is able to attend schools.

"I thank God he can use clutches to walk, and he can sit and feed himself."

Fred who is in his early 30s and has lived with the condition since childhood has endured the stigma, the ridicule and isolation by people who associate it with curses or other beliefs.

"I have cerebral palsy but I think the stigma is because people in the community do not know undertan it. It is not a curse or a disease. It is just a condition," Fred said.

He implored the community members to accept and support those who have the condition.

"Many children in Kenya have it and I am also appealing to the government to reach out."

Mrs Mugambi said the Dorcas Society is working with stakeholders to address the issue of cerebral palsy and providing the much needed care for those with the condition.

She said such families are many in Buuri.

"Many families were struggling in silence, not knowing where to turn, some having simply accepted their fate," she said.

She said the organisation was working in empowering the caregivers with practical skills and building a community where children living with cerebral palsy are see, supported and given opportunity to thrive. 

"Our greatest achievement is in the lives transformed," Mugambi added.

More than 300 caregivers and families are part of a growing community that supports psychosocial support efforts in the area, she revealed.

That as it may, a worrying revelation was that despite the resilience and progress made by those with the condition and the caregivers, a section of the community still held into unhelpful traditional beliefs.

The study found a significant lack of awareness and understanding about cerebral palsy in Buuri community, extending across caregivers, local leaders and even some community institutions.

A prevalent belief was that cerebral palsy was caused by supernatural factors, witchcraft, curses, bad omens, or punishment from God.

"Many people in the community believe this is witchcraft, or something bad in the family," said Mary Kagwiria, a local.

It is perhaps not strange then that it took some of the parents a long time to fully understand what ailed their children.

"It took me seven years to know my child had this cerebral palsy condition," said one.

The study also found that there was lack of access to diagnostic and support expertise.

It was further revealed that 52 per cent of caregivers knew that medication could help manage symptoms, 42 percent knew that assessment and therapy were available, but only 21 percent were aware that assistive devices such as wheelchairs and braces existed and could be fitted.

One in ten caregivers, or 10 per cent, said they did not know what treatments were available at all.

Buuri MP Mugambi Rindikiri said he was working to ensure there was inclusivity by catering for PWDs and those suffering from cerebral palsy.

"We will continue pushing for inclusivity," Mr Rindikiri said.