Family seeks money for legal costs in rare disease case
The De Wet family is in a legal battle with their medical insurance provider to obtain coverage for their son’s medical treatment.
Zachary de Wet, affectionately called Zach, was granted an “interim” treatment by the South African High Court last August, which covered his medical expenses until the end of November.
The healthcare provider was responsible for covering the entire duration of the Council for Medical Schemes (CMS) case, but they decided to halt their payments.
However, the family found themselves back in court in December, where the court ruled in their favour and instructed the medical provider to continue paying for the interim treatment. The medical provider challenged the ruling and took the case to a panel of three judges in the high court.
“As a result, the medical provider stopped paying for the treatment, and the family is still waiting for a court date,” said his parents, Jacques and Michaney de Wet.
Zach was diagnosed with a rare genetic disorder called Mucopolysaccharidosis Type 2 (MPS II) or Hunter syndrome, in March 2021.
How Zachary is doing
“Our beautiful Zachary is happy, incredibly busy, and loving every moment of life. To Zach, the world is full of possibilities and endless fun,” said the couple.
Zach’s health improved during the brief period when the medical provider paid for his treatment. His liver, spleen, and kidneys had shrunk, his heart damage had stabilised, and his blood results and other tests had improved.
“However, he still experiences delayed cognitive development and struggles with sleep, discomfort, and emotional issues,” said his mother.
“Despite his difficulties, Zach is a happy and loving child.”
“We have a beautiful boy whose teacher wrote on his report card that he likes to make others laugh. He has his whole life ahead of him. All we ask is for help for us to save our son,” said Zach’s parents.
More about the syndrome
Hunter syndrome is a rare, inherited genetic disorder caused by a missing or malfunctioning enzyme. The body doesn’t have enough of the enzyme iduronate 2-sulfatase. This enzyme’s job is to break down certain complex molecules, and without enough of it, the molecules build up in harmful quantities.
The build-up of massive amounts of these harmful substances eventually causes permanent, progressive damage affecting appearance, mental development, organ function and physical abilities.
Hunter syndrome occurs in one in 120 000 to 170 000 boys. There is no cure.
Treatment involves managing the symptoms and complications through weekly enzyme replacement therapy. It is an extremely
expensive treatment but absolutely life-changing and life-saving.
In need of assistance
The family’s greatest need at the moment is funds for legal costs. This month, the family will appear before the CMS. At present, they require R300 000 for the legal costs incurred.
“We will do anything for our son, but we also want to create awareness of the disease, help others and inspire them to keep fighting.”
Donations can be made in various ways, including to Zach himself, to Rare Diseases (a non-profit organisation that can issue section 18A certificates for tax purposes), and through an online store with raffles and handmade items to raise funds.
People can donate to Zach’s FNB account with account number 62908338115 with branch code 250655. Another way of helping is by simply clicking on the donate button on his BackaBuddy page.
