VIDEO: Alberton family speaks out after 11-year-old dies from rare disease
Payton Marais passed away on July 1 after being denied further dialysis. Her family is left heartbroken and demanding accountability.
Crystal Martin’s voice carries the weight of years spent fighting for her daughter’s life, not just against a rare disease, but against a healthcare system that, in her words, failed them repeatedly.
At the heart of it all is Payton Marais, an 11-year-old girl whose courage defied every limitation placed on her frail body. But on July 1, that fight came to a heartbreaking end.
Payton was born on December 2, 2013. By 18 months, her mother noticed delays.
“She wasn’t meeting her milestones,” Martin recalls. “Then one day, her aftercare called to say she was vomiting and couldn’t keep anything down.”
When her hands clenched and would not release, Martin rushed her to Clinton Hospital, starting a medical journey that lasted nearly a decade.
Years of questions, one diagnosis
For years, no doctors could explain Marais’ condition. She moved between hospitals and medical schemes, with repeated coverage changes complicating care.
In October 2022, Medihelp accepted Marais onto their medical scheme without a waiting period after the family submitted her full medical history.
In November 2022, Marais was diagnosed with cystinosis, a rare incurable genetic disease that causes cystine build-up and organ damage, especially to the kidneys.
A life-saving treatment denied
The treatment plan included Cystagon, crucial for removing cystine and preventing renal failure.
@albertonrecordCrystal Martin’s voice carries the weight of years spent fighting for her daughter’s life, not just against a rare disease, but against a healthcare system that, in her words, failed them repeatedly. At the heart of it all is Payton Marais, an 11-year-old girl whose courage defied every limitation placed on her frail body. But on July 1, that fight came to a heartbreaking end. Payton was born on December 2, 2013. By 18 months, her mother noticed delays.
Initially, Medihelp covered her hospital stay and medication but later cancelled her cover retroactively, making the family liable for R60,000.
“They now call us and demand payment,” says Martin. The family reported the case to the Council for Medical Schemes.
Public health, private battles
In 2023, Marais’ kidneys failed, and she began dialysis at Chris Hani Baragwanath Hospital.
In August 2024, she was hospitalised with pneumonia, deteriorated into carbon monoxide poisoning, and suffered cardiac arrest.
She was ventilated at Mulbarton Hospital, but Baragwanath refused to admit her to ICU.
Delays in ventilation caused brain damage. Mulbarton withdrew ventilator support and told the family to take Payton home to die.
Marais began breathing on her own and was rushed back to Baragwanath, where she was placed on palliative care and dialysis was stopped.
Hospital responses
Netcare Mulbarton confirmed she was brought in critically ill on February 15. The hospital was not informed of her palliative status and said continued ventilation would be futile.
She was discharged on February 17 to home care with oxygen support.
Hospital managers expressed empathy and are open to meeting the family.
Martin’s response
“We didn’t know she was on palliative care when we brought her to Mulbarton. We never signed any advance care plan before treatment changed,” Martin says.
She disputes claims that Marais removed her own ventilator tube, insisting Marais was awake and responsive when admitted.
A child failed by the system
To her family, Marais was a brave force who faced everything head-on.
Martin believes the healthcare system abandoned her daughter and accuses Medihelp and Baragwanath of negligence.
Communication from Baragwanath stopped in her final weeks.
Medihelp’s version disputed
Medihelp said Marais’ membership was terminated due to material non-disclosure on the application, citing previous diagnoses and treatments not declared.
Martin strongly disputes this, saying the family disclosed all medical information through their broker.
The case is under investigation by the Council for Medical Schemes.
A legacy of courage
Marais’ story has left a mark on her family and community.
“She deserved a chance and to be seen,” Martin says.
The family calls for justice and change to prevent others from being failed.
Tribute and thanks
Payton was cared for by a small network that supported her comfort in her final days.
Martin thanks those who provided financial, medical, and emotional support, including family, friends, medical staff, and neighbours.
• Alberton Record has reached out to Chris Hani Baragwanath Hospital for further comment and will share updates.
