Family seeks help for rare disease case – Can you offer support?
A family is seeking help with a rare disease case involving their young son, Zachary de Wet, who was diagnosed with Mucopolysaccharidosis Type 2 (MPS II) or Hunter syndrome, a rare genetic disorder caused by a missing or malfunctioning enzyme, in March 2021. Zach’s parents, Jacques and Michaney de Wet, have been fighting a legal battle with their healthcare provider to cover the cost of his expensive treatment, which involves weekly enzyme replacement therapy.
Last August, the South African High Court granted Zach an “interim” treatment, which covered his medical expenses until the end of November. However, the healthcare provider responsible for covering the entire Council for Medical Schemes (CMS) case decided to halt their payments, prompting the family to return to court in December. The court ruled in their favour and instructed the medical provider to continue paying for the interim treatment. Still, the 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.
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Despite the legal battles, 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. Nevertheless, Zach’s parents describe him as a happy and loving child who likes to make others laugh.
The family’s greatest need at the moment is funds for legal costs. This month, they will appear before the CMS and require R300 000 for the legal expenses incurred. You can make donations in various ways, including to Zach himself, 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. In addition, people can donate to Zach’s FNB account with account number 62908338115 and branch code 250655 or click the donate button on his BackaBuddy page. Zach’s parents hope their fight for their son’s health will create awareness of the disease, help others, and inspire them to keep fighting.
Source: Family seeks money for legal costs in rare disease case
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Picture: Facebook / FightForZach