At 21, Brandon Booysen from Randfontein in Gauteng is bedridden with end-stage kidney disease and severe bone complications after living with chronic kidney disease (CKD) since childhood.

He cannot sit upright for more than a few minutes because of severe pain and breathing difficulties. His mother, 41-year-old Lucille Booysen says going to a restaurant, watching a movie, visiting friends or simply seeing the outside world are no longer easy activities. 

“It’s heartbreaking to see my son suffer when he is supposed to go out into the world and live life,” says Lucille. 

Brandon was born with several complex medical conditions affecting his kidney, bladder and spine, Lucille says. 

He was diagnosed with stage-three CKD in 2009 when he was four years old.

Lucille says Brandon has undergone more than fifty surgeries and medical procedures, involving among other things, his bladder, legs, joints, bones and muscles.

For the first twelve years since he was diagnosed, Lucille says Brandon was treated in the public healthcare system, first at Charlotte Maxeke Academic Hospital and later at Nelson Mandela Children’s Hospital. 

He started dialysis treatment in 2018 at the age of 13. When he was 16, Lucille says his renal team suggested that he move to private healthcare to ensure access to the level of dialysis treatment he needed. The family moved his care to the private sector towards the end of 2021.

Dialysis treatment in the public vs private healthcare sectors

Access to dialysis treatment for patients with chronic kidney disease remains unequal between South Africa’s public and private health sectors.

In an August 2025 parliamentary reply, the Health Ministry reported that Gauteng had seven public dialysis units compared with 77 in the private sector. 

Nationally, there were 32 dialysis units in public health facilities compared to 261 units in the private healthcare sector according to the ministry’s written replies. 

The Health Ministry also reported that the limited resources and the high cost of chronic dialysis mean public-sector patients are prioritised according to their likelihood of benefiting from long-term treatment and eligibility for kidney transplantation.

Number of dialysis units by province and sector

A 2025 South African Medical Journal roadmap on kidney health also highlights the persistent inequalities in dialysis access between the public and private healthcare sectors. 

The study highlights the impact on especially adolescents and young adults in the public health sector because of gaps between paediatric and adult kidney services.

Choosing between essential household expenses and crucial medical treatment

Lucille is unemployed and says she is Brandon’s primary caregiver and does not work because he needs assistance throughout the day.

She helps him with meals, bed baths, medication and transfers between his bed, wheelchair and toilet. She also monitors his fluid intake and blood pressure because of his dialysis. 

Lucille is also caring for her seven-month-old daughter.

“I don’t get much sleep some nights. I only get into bed around 2am after completing Brandon’s care. If he needs help during the night, I get up again before starting the day at about 6am,” Lucille says. 

Lucille says Brandon received a social grant as a child, but it ended when he turned 18. She says he has not applied for another grant since becoming an adult because he cannot physically go to a SASSA office.

“I moved in with Werner, my boyfriend more than a decade ago. He has since been looking after us. Brandon’s SASSA fell away when he turned 18 and he has not gone back to apply as he can not go in physically himself due to being bedridden,” Lucille says. 

“I myself have not applied for SASSA as I can’t leave Brandon home unattended.”

Lucille says the family moved in with her partner, whom they now depend on financially, after her parents died more than a decade ago. Her parents had previously helped support the family.

“The company Werner works for pays a percentage towards medical aid and Werner pays in the rest,” Lucille says.

But Lucille says because of the high cost of Brandon’s care, the medical aid savings is depleted early in the year, and some treatment must then be paid out-of-pocket. 

According to Lucille, the family is unable to cover all the essential household expenses, including their rent, food, electricity and Brandon’s medication once the medical aid savings run out.

Costly dialysis home care

In 2024, Brandon was diagnosed with hyperparathyroidism, a condition that causes too much of a hormone that controls calcium in the body and weakens his bones over time.

The family has to transport him in a specific way to avoid further bone damage when he attends his three-monthly medical check-ups or needs emergency medical care.

Brandon now receives haemodialysis three times a week at home, using a machine and special filter to remove waste, extra salt and water from his blood because his kidneys can no longer do so effectively.

According to Lucille, Brandon’s renal team recommended home dialysis because travelling to a dialysis centre has become difficult and could cause further damage to his fragile body.

A dialysis nurse visits their home three times a week to assist with his treatment. Lucille says the medical aid covers Brandon’s home dialysis sessions, the dialysis team, renal doctor visits and some of his regular blood tests.

“When medical aid savings are depleted, we have to resort to paying cash for everything that the medical aid does not cover and no medical aid savings is left.”

According to Lucille, three of Brandon’s medicines cost R6 316 a month in total. She says the family also owes about R8 000 for blood tests that were not covered by their medical aid and have since been handed over for debt collection.

The family uses prepaid electricity and Lucille says they struggle with the additional electricity needed to run Brandon’s dialysis machine for about five hours, three times a week.

Lucille says she had to sell her car and some of their belongings earlier in the year to help pay for Brandon’s medical aid.

“There are months when we have to cut back on food to pay for some of Brandon’s medication and other expenses,” Lucille says.

“We hardly get any support from family and the community.”

Waiting to be reassessed for kidney transplant

The family hopes Brandon will be put on the waiting list for a kidney transplant. 

Lucille says his doctors told the family that Brandon’s hormone levels need to improve before he can be reassessed for a kidney transplant.

According to Lucille, the medication prescribed to help control this costs R3 200 a month and is not covered by their medical aid.

Correspondence shared with Health-e News shows that Brandon’s transplant specialist is willing to reassess him for free for a kidney transplant, but only once his hormone levels improve.

Despite being bedridden, Lucille says Brandon finds joy in drawing.

“Brandon continues to draw, something he has enjoyed since childhood. He has received diplomas and A+ certificates for his artwork, Lucille says. 

“Drawing has become his therapy.”

Brandon says he remains hopeful that he will receive a kidney transplant and regain some independence.

“I still have fight left in me,” Brandon says.