The challenges faced by children with cerebral palsy (CP) in Lesotho are profound and multifaceted, and require conscientious and proactive efforts to mitigate the plight of victims.
Cerebral palsy is a congenital disorder of movement, muscle tone or posture. It is due to abnormal brain development, often before birth.
Symptoms include exaggerated reflexes, floppy or rigid limbs and involuntary motions. These appear by early childhood. Long-term treatment includes physical and other therapies, drugs and sometimes surgery.
Children with this disorder require specialised care and equipment, but are often left without the essential resources needed to manage their condition effectively.
As a parent of a child with the condition, ‘Mateboho Phakalesane, has first-hand experience and so she knows better. Her seven-year old daughter has CP.
According to Phakalesane, raising a child with CP is tormenting, especially in a village where neighbours constantly make disparaging comments about her ability to care of her child.
This she blamed on general ignorance and lack of information, as there are still many people who do not understand that the condition does exist and can affect anyone.
“I usually overhear people calling me ‘a muscled woman’ with the strength to carry an old child on my back. And when I lock the child indoors so I can run errands, they say I am hiding the child.
“Sometimes I can’t attend community events such as meetings or funerals because I have to look after my child, yet the neighbours accuse me of being aloof and detached.
“It is a real social challenge having a child with this condition,” she said.
As for social grants, Phakalesane said it is not everyone that receives them.
She noted that everything about a child with CP is different, including their eating habits are not conventional as they are not able to chew and can only eat semi-solid food.
The chairperson of Mo-rate Cerebral Palsy Association of Lesotho (MCPAL), Taelo Lejakane, said with 99.9 percent of patients lacking access to appropriate wheelchairs, and facing additional barriers in healthcare, there is an urgent need for action.
Lejakane indicated that as far as cerebral palsy is concerned, wheelchairs are not just a convenience – they are a necessity.
He said, unlike standard wheelchairs, those needed for children with cerebral palsy are tailor-made to address their specific physical needs and to support their overall health and well-being.
“These specialised wheelchairs help maintain posture, prevent muscle contractures, and enhance mobility.
“Unfortunately, the cost of these wheelchairs is prohibitively high, with prices starting at a minimum of M25,000,” he pointed out.
Lejakane further explained that the financial burden of acquiring such equipment often means that families cannot afford them, leaving many children confined to beds or carried by their parents, which can worsen their health.
Beyond wheelchairs, some individuals with cerebral palsy, especially older children and adults, require mechanical aids to transfer from beds to wheelchairs.
These transfer machines, essential for safe and comfortable handling, are equally expensive.
The lack of such equipment further compounds the challenges faced by families and caregivers, making daily care even more difficult.
To address these critical needs, MCPAL is launching a campaign focused on securing specialised wheelchairs and transfer equipment.
The campaign has identified a school within the country that has expressed willingness to assist with the production of these wheelchairs. However, financial support is still needed to cover the cost of materials and the transportation of the wheelchairs from abroad.
The key objective of the campaign is to raise funds to purchase and transport specialised wheelchairs and transfer equipment.
The association also wants to partner with schools and other organisations to facilitate the production and distribution of wheelchairs.
They advocate for the establishment of dedicated healthcare facilities where children with cerebral palsy receive tailored medical care and attention.
They also seek to enhance support services by developing a facility staffed with doctors, psychologists, and trained caregivers to provide comprehensive support to children and their families.
“Current healthcare practices often fall short of addressing the unique needs of children with cerebral palsy.
“These children frequently require extended medical attention and specialised care that goes beyond the capabilities of general healthcare settings.
“They are often treated like ordinary patients, leading to frequent hospital visits and insufficient care,” Lejakane said.
MCPAL founder Mohasi said she is on a determined mission to ensure that no child with cerebral palsy is left behind.
With a passionate commitment to improving the lives of these children, Mohasi and her organisation are calling for greater inclusion in government initiatives, increased support in the form of essential equipment like wheelchairs, and a more empathetic approach within educational settings.
“MCPAL will not rest until our voices are heard and acted upon. We will knock on every door until our voices are heard. No child should be excluded from opportunities and support due to their condition.”
She stressed that they need help with wheelchairs saying that there is guidance done by occupational therapists.
“The therapists assist with measuring the child until the wheelchair is done, so that is comes out aligning with the condition of the child,” she noted.
Mohasi addressed the issue of children with the condition who are in schools saying that such students are always left behind because they do not have patience.
“That is why we are going to schools and conscientising both the children and teachers on the need to be patient and loving during classes.
“MCPAL is actively engaging with schools to foster a more inclusive and supportive environment. The organisation is working to educate both students and teachers about the needs of children with the condition, promoting patience and empathy,” Mohasi added.
MCPAL recently received food parcels and nappies from the Lesotho Post Bank as part of the Rata Oa Heno initiative.
The Lesotho Tourism Development Corporation in collaboration with the Selemo Association last month celebrated the beginning of the Basotho New Year under an initiative named ‘Rata oa Heno’ in Maseru.
This initiative, which was launched to honour King Letsie III’s birthday in July, embodies the spirit of unity and community that the King has championed throughout his reign. The phrase ‘Rata Oa Heno,’ meaning ‘Love Thy Neighbour,’ aims to leave a lasting legacy of service and solidarity among the Basotho people.
During the launch, King Letsie III expressed his pleasure in celebrating the new year with the Basotho people and launching the ‘Rata oa Heno’ initiative.
He urged every Mosotho to embrace the spirit of kindness and treat their neighbours with love.
“With this initiative, I call upon all who can help the more disadvantaged members of our communities to reach out,” said King Letsie III.
According to Cerebral Palsy.org statistics, between one and four children for every 1,000 babies born develop cerebral palsy.
“About 764,000 people currently live with cerebral palsy, with 500,000 of those being children and teens,” the organisations reveals.
Each year, 8,000 to 10,000 infants are diagnosed with cerebral palsy while 1, 200 to 1,500 pre-school-aged children are diagnosed with the same disease.
Spastic cerebral palsy remains the most common type of the disorder, affecting close to 61 percent of all people with cerebral palsy.
