If there is a statement that still haunts Llona Makhubedu, it is: “Switch off the machine.”

Eighteen years ago, her first-born son, Paballo Makhubedu could not breathe on his own after his birth and was placed on life support. Llona recalls that doctors asked her to consent to withdrawing life support, but she refused.

“I can’t put an end to my first seed. If it happens that he passes away, let it be through the will of the Lord,” she said.

Paballo survived. This month he turned 18.

Paballo was diagnosed with cerebral palsy and is non-verbal. Today he attends boarding school at the Boikanyo Disability Centre in Leboneng near Hammanskraal, north of Pretoria.

Llona says he communicates using sign language, and that after years of caring for him, she has also learnt to understand him by reading his lips.

“Paballo’s situation is now fine, he’s a happy child who attends his schooling at Boikanyo Disability Centre. He enjoys outings most of all, especially where there’s water,” Llona tells Health-e News.

Llona wants to share their story to show what is possible for a child with cerebral palsy and their caregiver when public healthcare, psychosocial, educational and family support are in place.

But she acknowledges that even with support, it has been a difficult journey.

A difficult start

Llona remembers Paballo’s birth at Refentse Clinic in Stinkwater as traumatic. She says he was born ‘feet first’ and did not cry after delivery.

Paballo could not breathe on his own and was placed on life support. She says while he was in intensive care, she watched other families lose their babies.

“I remember while in there, everyday there was a corpse picked out of the ICU ward, that includes twins of someone I am close to who passed on different days. It was draining to see that as a new mother and I said, Father, let it not be me,” she says.

Paballo pulled through, despite the advice from doctors to withdraw life support. 

But Llona says she then had to learn how to care for a child with complex needs.

According to Llona he was fed through a feeding tube. She had to carefully follow doctors’ instructions on his feeding, medication and healthcare at home.

Llona says the challenges were not only physical.

Learning how to care for Paballo

Llona says she began struggling with the psychological impact of caring for a child with complex disabilities, especially as Paballo grew older.

She remembers watching other children his age begin crawling while Paballo could not. Llona says she became conscious of people staring and nudging one another when they saw her pushing him in a stroller.

“There is a stigma attached to the young disabled kids in the village. I couldn’t cope with it all. I developed anger because along the way, given the change in life routine, you lose yourself,” she says.

Llona says while taking Paballo to George Mukhari Hospital in Tshwane for occupational therapy, speech therapy and other services as a young child, she was referred for counselling to help her cope.

“I was booked for counseling to alleviate the anger I was going through, and it worked wonders. Both of us managed to weather the storms of emotional and psychological pain,” she says.

Llona says she also received strong support from her family, including Paballo’s grandmothers, Eli and Thabitha, and her sisters, Cynthia and Dolly.

A nanny, Mampho, helped her with Paballo’s daily exercises, while the schools he attended provided further support and help with access to healthcare.

Paballo previously attended Little ABLE’s Children’s Sanctuary in Pretoria. Llona also remembers the late Junkie Mputle, a driver who transported Paballo to school and adapted a seat with a customised safety belt to make travelling safer for him.

Support continues 18 years later

Looking back, Llona tells Health-e News that she does not feel she was denied the support she needed after Paballo was born.

“Honestly speaking, I got all forms of support and I don’t have any qualms about what was offered,” she says.

Llona no longer receives counselling, and says she has learnt to cope over the years. 

She continues to receive caregiver support through Paballo’s school and relies on her family when he is at home.

“I still receive caregiver support at school, and when he’s home sometimes I take family responsibility leave to give him the care. I no longer receive counseling, mainly because I have accepted and coping now. I’m now being invited to give others advice and support.”

Llona says there are still practical things that would make caring for Paballo easier.

“Assistance that I might need is for him to get a supporting mattress, sensory learning materials especially when he is home, and a body supporting wheelchair – that might help a lot,” Llona says.

Inclusion beyond healthcare

Llona’s experience stands in contrast to that of some mothers caring for children with cerebral palsy. Health-e News recently reported on a young Limpopo mother who said she felt overwhelmed and was left without counselling after her daughter’s diagnosis. She also told Health-e News that she struggled to access occupational therapy and assistive devices.

A 2025 study involving mothers of children with cerebral palsy in rural Limpopo found that caregivers face significant financial, psychological, social and health pressures. The study highlighted the importance of support from families, healthcare workers, other caregivers and community organisations.

Thapelo Tshabalala, founder of Tshwane Disability Empowerment Projects – an organisation aimed at empowering people living with disabilities – says support for people with disabilities and their families needs to extend beyond medical care.

Tshabalala, author of Epitome of Disability: Challenging Barriers in Education and Beyond, says the inclusion of people with disabilities is not just the government’s responsibility. 

“Inclusion is not a luxury, it is a necessity. It is also the responsibility of every member of society, not only the Department of Health,” he says. 

“Persons with disabilities have the right to participate fully in society through inclusive sports and recreation, accessible tourism, and transport systems that are designed for everyone.”

Tshabalala says creating opportunities for people with disabilities to participate in meaningful activities can play an important role in their physical and mental wellbeing. 

According to Tshabalala, people with disabilities can experience trauma, rejection and social isolation. He says inclusive programmes can help promote confidence and social interaction.

For Llona, Paballo’s eighteenth birthday was a milestone after years of hospital visits, therapy, exercises and learning how to care for him.

“I am saying to all the mothers who have doubts about tomorrow, to tie their shoes and run the race of victory, and fight for the well-being of their kids.”