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A Mother’s Grief Transforms into Hope: A Quest to Build a Haven for Children with Special Needs

24 November 2023 by Pascalinah Kabi

The late Khotso Mohapi’s potrait hangs on the wall of her mother’s living room in Lithabaneng. Credit: Limpho Mohapi.

At forty-years-old, Limpho Mohapi sifts through a collection of 13 printed photographs, each telling a profound story of children with special needs in Lesotho.

Among these images, a poignant portrait emerges – that of Mohapi’s son, Khotso, who tragically succumbed to complications linked to cerebral palsy (CP) in 2020.

As Mohapi delicately navigates these visual memories, a palpable sense of loss lingers. “I miss him so much,” she confides, her words echoing the depth of a mother’s enduring grief.

The Genetic and Rare Diseases Information Centre defines cerebral palsy as a cluster of neurological disorders that can impact the brain and/or spinal cord. According to the centre, cerebral palsy arises from abnormal brain development or damage to the developing brain.

Signs and symptoms typically manifest in infancy or early childhood and differ based on the type of cerebral palsy, the severity of the condition, and the specific area(s) of the brain that are affected.

Khotso was diagnosed with cerebral palsy after a long journey searching for answers in Lesotho.

“He was eventually transferred to Bloemfontein, and we were told that there were no specialists here in Lesotho. We stayed there for a very long time as doctors carried out test after test.

“This continued until his blood samples were taken to America for testing. Results never came back until I was told that Khotso suffers from cerebral palsy. We were discharged from Bloemfontein, and I was told that he was going to live with this condition all his life,” Mohapi said.

A 2015 study named Fighting Cerebral Palsy in Africa reveals that preventing cerebral palsy in African children is challenging due to limited understanding of its causes in African countries. 

The study emphasises that the situation is worsened by lack of resources for efforts to help those affected by this disease.

“Large gaps remain in our knowledge of its aetiology across the continent, its risk factors, even its prevalence—information vital to the development of prevention strategies,” highlights the report.

Limited understanding

Adrian Burton, the author of the report, notes that Africa’s understanding of cerebral palsy’s common co-morbidities, crucial for developing systems to manage patients and support their families, is lacking.

Burton cites Kirsten Donald, head of developmental paediatrics at the Red Cross War Memorial Children’s Hospital, University of Cape Town, South Africa, who states that African areas with limited resources, the main factors contributing to cerebral palsy include difficulties during birth (birth asphyxia), a condition causing yellowing of the skin and eyes (kernicterus), and infections in the baby’s central nervous system during the newborn period.

“This is quite different to [CP] seen in industrialised nations, where prematurity and low birth weight are the major risk factors. Many cases of CP in Africa could therefore be prevented if the right human and material resources were available. With a possible prevalence of up to 10 cases per 1000 births, that’s a lot of children who are not able to reach their potential.”

Credit: Centre for Learning and Childhood Development.

Mohapi’s late son, Khotso, is one of the many children in Lesotho who have not reached their potential due to cerebral palsy, compounded by exorbitant expenses.

“He underwent an operation on his stomach to insert a gastrostomy feeding tube. There were many challenges. First of all, it was very expensive to access his special diet, which was not only expensive but not available in Lesotho supermarkets.

“I could only find his prescribed milk in clinics and hospitals, but it was not easy for health facilities to give me the milk for a whole year. We ended up relocating to South Africa when he was one-year-old because there were no facilities offering some of his special needs here in Lesotho,” Mohapi said.

In 2011, both Mohapi and her son enrolled at Bunden Daycare Centre in South Africa, with Mohapi daily learning new skills on how to care for her son.

“Living with Khotso for 13 years, staying indoors full-time, was difficult because now that he has departed, I am unable to enjoy outdoor life. I just love spending time with children with special needs,” Mohapi said.

My cross to carry

Besides the 13 photographs of children with special needs, Mohapi has a long list of over 50 children and their parents’ phone numbers, some marked with a crossing line.

“Those I have crossed a line on their names are dead,” Mohapi said. She came across the parents of these children through the media.

Mohapi firmly believes that taking care of Khotso and another child at 17, who had worms coming out of his body, was God’s way of preparing her for a bigger project.

“God has a plan because now that Khotso is not here, I still find myself being pulled into the lives of children with special needs. Helping children with special needs is my passion,” she said.

Today, Mohapi dreams of opening a centre of excellence for children with severe special needs, like Khotso, with construction funders lined up to assist her.

However, her main obstacle is the lack of land. “I need the land. There are some funders willing to construct the centre, but their condition is that I must own and have land rights.”

Mohapi pleads with good Samaritans to either transfer land ownership rights to her or lease the land at no cost. While she prefers the centre in Maseru, she is willing to have it established anywhere across the country.

“We need a school for special needs children because there is no facility that caters to their needs. For instance, there was no school that would help Khotso with his feeding tube. Those that are operational are not for severe disability. I am trained to deal with severe disability among children.

“Getting help in terms of staffing will not be a problem; I will train parents because I would like to work with parents. While not every parent loves living with these children, there are some parents who requested training and pledged that they would love to work with me once we open the school,” Mohapi said.

Meanwhile, Itumeleng Mohase, founder of the Morate Cerebral Palsy Association in Lesotho, strongly believes that the M650 disability grant is inadequate to meet the needs of cerebral palsy patients.

According to Lesotho Times, Mohase recently urged the Lesotho parliament to consider the minority of people with special needs when enacting and implementing laws.

“There is a need for inclusiveness. I urge you to make changes where you see that the system is lacking.” Mohase told the parliament that parents and caregivers of cerebral palsy patients face difficulties holding jobs and paying for expensive medical costs.

“Almost all of them (cerebral palsy patients) need wheelchairs because they cannot sit up straight like normal people. Wheelchairs are expensive, and most parents cannot afford them, as the cheapest is M20 000,” Mohase said.

Mohapi shares the same sentiments. “It is very expensive to raise a child with rare special needs. My child’s skin had not fully developed, meaning he only used vaseline or soap prescribed by a doctor. He used diapers all his life and very selective ones because he had very sensitive skin,” Mohapi said.

Lessons for Lesotho

For numerous parents and caregivers of children with cerebral palsy in Lesotho, assistance is often sought across the border in Bloemfontein, South Africa.

Burton highlights Malamulele Onward, a non-governmental organisation based at the Children’s Memorial Institute in Braamfontein, South Africa, as a regional leader in providing appropriate, low-cost, community-based classes. These classes teach parents of cerebral palsy patients basic rehabilitation techniques.

“Many dedicated therapists and mid-level staff work at hospitals across the continent, but don’t have specialized training in CP,” explains Gillian Saloojee, the organisation’s executive director.

“Over the past nine years, our work with over 700 children and their families in deeply rural areas of South Africa, Lesotho, and Rwanda has shown that a sustainable intervention model not only has to include training for rehabilitation therapists but also for parents and families. This includes the provision and fitting of postural equipment, hands-on therapy, and regular mentoring visits.”

Burton also points out that Cerebral Palsy Africa, a non-governmental organisation based in Duns, Scotland, United Kingdom, is engaged in similar projects in Ghana, Zambia, Malawi, Kenya, and Uganda.

Credit: Early Milestones Intervention and Development Centre.

“We provide training to rehabilitation workers involved in community-based projects, which allows access to children and families and helps win their trust,” explains co-founder Archie Hinchcliffe.

“In addition, we train specialist therapists in guaranteed long-term paediatric employment. This boosts the efforts of rehabilitation workers to help avoid children developing contractures and ensures their continued progress.

“We also help set up self-sustaining workshops in which the workers we train make assistive, supportive devices from waste paper and cardboard available at hospital pharmacies. Using appropriate paper-based technology methods, chairs and standing frames can be made to measure, facilitating each child’s development and social participation.”

According to Burton, other organisations working on the ground in Africa include Botswana’s Cheshire Foundation, Nigeria’s Benola, Burundi’s Handicap International, and Zimbabwe’s Ronald Trust for Cerebral Palsy and Autism Children.

“The African Paediatric Fellowship Program at the University of Cape Town is also offering special training for African doctors, nurses, and rehabilitation practitioners,” said Burton.

Many children in Lesotho face challenges similar to Khotso’s, and Mohapi aims to ease the burden on their parents by opening a centre of excellence for children with severe special needs, thus alleviating the caregiving burden on parents.

It is evident, however, that Mohapi, Morate Cerebral Palsy Association of Lesotho, and various other stakeholders, such as the Ministry of Health, will require assistance to effectively tackle the challenges associated with cerebral palsy in Lesotho.

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