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Forgotten community of children with cerebral palsy

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PROVIDING CARE—Medical officers assisting children with disability

Despite her advancing age, 53-year-old Chrissy Dimba, who stays in Chiuzira Township in Lilongwe, decided to take over the responsibility of taking care of her nephew, Prince, who has cerebral palsy.

She assumed that role because her daughter could not manage the condition.

Prince cannot stand, walk or sit down; as such, he needs a lot of attention as he cannot control the functions of body. For example, he is unable to control urine.

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Dimba says she, and others who are keeping children with the condition, find it hard to raise them.

According to Dimba, some people do not feel comfortable with the children.

“As a result, both those who take care of the children as well as the children themselves are subjected to insults,” she says.

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Another woman, Catherine Mwale, has single-handedly been taking care of her daughter after the husband abandoned the child.

“He left after learning that the child had developed a disability. My relationship with my husband has been very bad, especially after our child developed cerebral palsy.

“I carried the burden alone until I learned that there were some people who were offering services to children with special needs free-of-charge,” says Mwale.

Malawi Council for the Handicapped (Macoha) Community Rehabilitation Assistant in Chiuzira area, Patrick Chimphanga, says it is unfortunate that women with special needs children are stigmatised while others are divorced on the grounds that their children have disability conditions such as cerebral palsy.

“Every parent enters into marriage to do their best to support their partners and children. It is, therefore, unfortunate that women are victimised simply because they gave birth to children with cerebral palsy. If only each parent played their rightful role, problems faced by children with this condition would be eased,” Chimphanga says.

He says, tragically, there is a high rate of men in Chiuzira area who simply focus on work, leaving the task of raising children to the mothers, thereby creating emotional and physical distance between themselves and their children.

Prince is one of 700 children that have a disability in Chiuzira, according to Macoha.

Coincidentally, most of the children developed sickness after they were born.

The children are facing discrimination as there has been little awareness on what it means to have the condition and how to mitigate its impact, activists say.

Hajira Alli, who fights for the rights of children with disabilities, describes the situation in Chiuzira as concerning.

“If well taken care of, children with disabilities can become agents of positive change. In my case, my parents did not let me suffer simply because I had a disability. Because they supported my education, I am now self-reliant,” says Alli who has a disability with her legs.

She suggests erection of structures that can be used for offering physiotherapy services to children with disability as one way of helping such children.

In the absence of such facilities, however, people like Kennedy Kadewere, a therapist who runs Active Life Clinic as director, have started filling the gap.

After realising that some children with the condition were failing to access physiotherapy services due to factors such as long distance and financial problems, he decided to start offering such services to those in the Chiuzira area free-of-charge.

“I have been doing this to those who stay far away from Kamuzu Central Hospital or Bwaila, where such services are also offered free-of-charge.

“Most of the kids we have been helping could not sit, stand or walk, let alone control the head. Some couldn’t speak or communicate but, after launching the free therapy services, the condition of most of the children has improved,” Kadewere says.

The clinic has opened two centres; one at Chiuzira and the other at Chilinde Primary School in Lilongwe.

Kadewere says the clinic, which started offering services in 2020, is not able to provide the services all the time because of lack of resources. He asks well-wishers for help.

“Active Life Clinic offers these services for free. We use the little we get from patients at the private clinic to run programmes at Chiuzira and we have plans to reach out to more kids with the services,” he says.

Chief Reproductive Health Officer in the Ministry of Health, Rosemary Bilesi, says there is a need for collaborative efforts to address challenges related to cerebral palsy.

“Otherwise, we, as a ministry, have a rehabilitation centre where we provide physiotherapy care. The only setback is that we do not have enough human resources,” she says.

Bilesi urges parents and guardians not to lock up children with disabilities but rather accept the situation and link up with people who can help them.

Minister of Gender, Community Development and Social Welfare, Patricia Kaliati says it is disheartening to see children with disability facing discrimination.

“We are asking the communities in the country to hold hands and help families that have children with disabilities. Let us show love to the children. We should imagine being in their shows,” Kaliati says.

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