…celebrating courage of raising a child with cerebral palsy
Mathatisi Sebusi
AS the world marks World Cerebral Palsy Day tomorrow (October 6), we pause to honour not only individuals living with cerebral palsy but also the unsung heroes—the parents and caregivers—who dedicate their lives to supporting, advocating and loving their children in the face of immense challenges.
This week, the Sunday Express speaks to Maboitšepo Ponya, a devoted mother to 11-year-old Boitšepo, who was diagnosed with cerebral palsy at the age of three. Her journey is one of resilience, heartbreak, and ultimately, purpose—a story shared by countless parents raising children with special needs.
The Beginning of an unexpected journey
Eleven years ago, at just 24, Ms Ponya from Ha Foso became a mother for the first time. What should have been a moment of joy quickly turned into a nightmare. Only five days after being discharged from hospital, her newborn daughter began turning purple in the face and suffering violent seizures.
Despite rushing back to hospital, medical personnel dismissed her concerns, insisting that the baby was “just playing”—even as she cried through the seizures. What followed were sleepless nights, daily convulsions, and years of uncertainty.
For the next three years, Ms Ponya lived in and out of hospitals. Baby Boitšepo missed developmental milestones—she could neither sit, crawl, nor respond like her peers. Despite numerous consultations, doctors struggled to diagnose her condition.
At six months, her condition worsened. After relocating from Leribe to Maseru, further medical imaging (CT scan and MRI) finally revealed a brain cyst. She was prescribed epilepsy medication, but her health continued to decline.
A painful delay in care
Ms Ponya believes her daughter’s condition could have been prevented. She recalls a complicated labour—her cervical dilation failed to progress, and no doctor was available to perform an emergency caesarean section. She was only operated on the following day. Although her hospital records described the birth as “normal,” she suspects the delay may have caused her daughter’s brain damage.
“It took long before I could get help. The labour pains were severe, but there was no doctor available. I delivered the next day via caesarean section,” she recalls.
Her desperate search for answers led her into the hands of fraudsters claiming to offer cures. One, pretending to be a “Western doctor,” sold her bottled still water as medicine.
Finally, a diagnosis
When Boitšepo turned three, a new doctor reviewed her case and was alarmed to discover that she had never been operated on after the brain cyst diagnosis. An urgent referral to Bloemfontein followed, where a life-changing operation was finally performed. After the surgery, the seizures stopped.
Today, at age 11, Boitšepo is full of energy and joy. Though she can barely walk and cannot talk, and her left side remains non-functional, she no longer takes medication. She still requires feeding assistance and uses diapers—but she is thriving in her own way.
After the surgery, Boitšepo was officially diagnosed with cerebral palsy. However, Ms Ponya was sent home with no counselling, no guidance, and no support. She turned to the internet to educate herself on how to care for her child.
From despair to empowerment
For years, Ms Ponya cried herself to sleep, overwhelmed by the emotional and physical demands of caring for a child with special needs alone. Over time, she began to accept her new reality and found solace in meeting other mothers during hospital visits. She later joined an association of parents of children with cerebral palsy, where she found hope and a renewed sense of purpose.
“Being around mothers whose children have special needs makes things a little easier. We speak the same language. Now that my child is eleven, I support, counsel, and hold the hands of other mothers going through the same journey,” she says.
Battle for inclusive education
Securing an education for Boitšepo has been one of her biggest challenges. After numerous rejections from schools—many citing her daughter’s need for feeding assistance or use of diapers—Ms Ponya finally found a place for her at Mamello School and Special Needs Centre in Maseru.
“All I ever wanted was for my child to be independent and interact with other children,” she said.
She continues to call for greater access to inclusive education, urging the Ministry of Education to ensure that children with special needs are not left behind.
“Children like Boitšepo should not be left behind while their abled peers go to school. Education should be for all,” she insists.
Challenging stigma
Ms Ponya also advocates for increased public awareness and acceptance of people with disabilities. She says stigma remains widespread, with mothers of children with special needs often subjected to ridicule and uncomfortable stares.
“People still do not accept children with disabilities. When you are in public spaces, you are met with funny looks and amusement. It is very uncomfortable,” she says.
She urges the government to provide counselling and mental health support to parents and caregivers, noting that emotional support is essential for their well-being.
Call to action
Her story mirrors findings from a 2023 WHO and UNICEF report, which revealed that 317 million children and youth globally are living with developmental disabilities. Many face limited access to healthcare, social exclusion, and a poorer quality of life due to lack of support and systemic inequality.
The report calls for inclusive policies, public education, and targeted support systems for children with disabilities such as cerebral palsy.
As the world commemorates World Cerebral Palsy Day, we salute Maboitšepo Ponya—a mother who transformed her pain into purpose, and who now walks hand-in-hand with others, lighting the path forward for parents of children with special needs in Lesotho and beyond.