Hope on wheels: Push to empower Kenyan children with celebral palsy

Peninah Ndunge Nyamai, a resident of Makindu, carries her seven-year-old son Abednego Kariuki, as she tells the governor of Makueni County, Mutula Kilonzo Jr, the challenges of taking care of a child with cerebral palsy. [Gardy Chacha, Standard] At around 11 a.m., Peninah Ndunge Nyamai, arrived at Makueni Institute Vocational and Empowerment Centre, carrying her seven-year-old son, Abednego Kariuki, in her arms. The weight of the boy was evident in the strain on her facial muscles. Nyamai had made the journey from her rural home in Makindu, about an hour and a half away by public transport, to Wote, Makueni County's capital, to obtain a free wheelchair for her son. Nyamai came to the institute as part of an event aimed at fitting at least 400 people living with disability (PWDs) with assistive devices. "Compared to what we've gone through over the last seven years, this is no trouble at all," she says. "I've registered his name with many well-wisher organizations, but we've never been lucky enough to get a wheelchair." Her son needs the wheelchair because he was born with Cerebral Palsy (CP), a condition that occurs when a newborn is deprived of oxygen, typically in the early days of life. The undertaking follows the signing of a Memorandum of Understanding (MOU) between Makueni County government and Christian charity organisation Hope Mobility Kenya (HMK). Addressing the press, Makueni governor, Mutula Kilonzo Jr, said Cerebral Palsy was one of the conditions that affects PWDs. "Today, we have children born with Cerebral Palsy. Even as they grow, they remain dependent on adults to move them from one place to another. Feeding them also becomes a challenge. The kind of wheelchair they need must cater to their disability, and it should also have a table to make feeding easier," the governor said. Indeed, according to Marygoretti Kilonzo, the Project Officer at HMK, in nearly all their events, the majority of PWDs who receive wheelchairs are children with CP. "Close to 80 percent of all children brought to these events have CP," she told the Standard. At the event, as PWDs with different types of disabilities were fitted, one could not help but notice a significant number of parents, some with children as old as 18, living with CP. Appropriate wheelchairs Marygoretti is also a physiotherapist. She says: "CP is a condition that occurs when a foetus is deprived of oxygen. Depending on the extent of deprivation, CP can be mild or severe, or somewhere in between. "CP patients need specialized wheelchairs. Some patients do not have control over their back and their head; they would need an intermediate wheelchair that has the posture and support needed. "Today, we have a team of technicians, mechanics and clinicians, who will follow World Health Organisation guidelines to fit the right wheelchairs for every PWD. "For children with CP, this wheelchair will change the lives of both the child and the caregiver. "For instance, many schools do not admit CP children who don't have specialized wheelchairs. This will ensure that they can now attend school. "The caregiver will also feel relieved from the strain of having to lift a heavy person around the house or even outside," she said. A child with cerebral palsy immediately after being fitted and provided with a wheelchair. This type of specialised wheelchair costs not less than Sh45,000 [Gardy Chacha, Standard] An intermediate wheelchair costs no less than Sh45,000 at market rate. Marygoretti explains that a patient with severe CP could be harmed rather than helped by a basic wheelchair. "For someone who cannot support their head or back properly, they are likely to develop secondary deformities over time." Physiotherapy is an essential part of managing the condition. "It can help improve motor skills and prevent movement problems from worsening," says Marygoretti. She adds, "Physical therapy includes strength and flexibility exercises, heat treatment, and massages." The extent to which physiotherapy would help depends on severity. Physiotherapy is usually adequate for milder forms of CP. In more severe cases, physiotherapy is combined with prescription medications. Ultimately, physiotherapy offers the child the best chance to improve motor function. Justus Mwanthi and his wife pay Sh250 per day for their son, born in 2019, to undergo physiotherapy. "The price has gone up; we are now charged Sh1,000 per session at a public hospital," he says. Mwanthi, a primary school teacher with a monthly salary, admits to the financial struggles that make it difficult to afford a wheelchair. "A child born with CP needs so much. They also require nutritional therapy: whenever we take him for physiotherapy, we also visit the nutrition department for supplements to support his growth and development," he says. Mwanthi takes his son for physiotherapy at a public hospital twice a week. "We are charged Sh900," he adds. Children with CP, according to nutritionist Gladys Mugambi, need a healthy diet to sustain their energy levels and body functions. "They should eat a balanced diet like everyone else. But since children with CP often have limited motor functions, many struggle to swallow food," she explains. "Usually, their food is mashed into a paste to make swallowing easier. Parents and caregivers must be extra patient when feeding them. Children with cerebral palsy need frequent nutritional assessments to ensure they're getting enough, while also preventing overfeeding, which could lead to other complications," she says. Abednego Mutua, the Disability Mainstreaming Officer in Makueni County, notes that providing appropriate assistive devices to PWDs enhances their quality of life. "CP is a lifelong condition, but with physiotherapy and the right assistive devices, we have seen some CP patients improve and become economically active members of society. These wheelchairs are crucial for their independence and a more fulfilling life," he says.

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