Zachary De Wet is a sweet little boy with a rare disease called Mucopolysaccharidosis Type 2 (MPSll) or Hunters Syndrome; his family and the Rare Disease community are fighting for the medical cover he deserves. This is how:
Johannesburg, South Africa (09 May 2023) – At the age of two, Zachary de Wet, affectionately known as Zach, was diagnosed with an incurable rare disease. The family were devastated but thankful to be on medical aid which would help cover the treatment for his disease, slowing its progression. Before long, however, they realised the medical scheme would not be covering Zach’s medical costs… and so the battle began.
Mom, Michaney de Wet, and Dad, Jacques de Wet, were left stunned when their medical aid refused to pay for Zach’s treatment. Treatment in his case is essential because it means Zach’s life expectancy goes from early teens to well into his 50s, giving him a chance at a full life.
Hunters Syndrome prevents Zach’s body from breaking down certain proteins due to a missing enzyme in his DNA makeup. These proteins build up in his body, surrounding his vital organs, brain, bones and joints. Over time, this buildup can be fatal as they prevent the body from functioning correctly. Enzyme Replacement Therapy is how it is treated.
As Hunters Syndrome is so rare, the cost of treatment is very high. One month costs around R250,000; a sum that the de Wet’s could scarcely cover alone and yet, they are being expected to.
To combat the medical aids refusal to cover the costs, the family with the support of Rare Diseases South Africa, went to the courts where they won an interim order from the High Court which specified that the medical scheme would have to cover Zach’s costs while the case was waiting to be heard by the Counsel for Medical Schemes (CMS). They felt utter relief as Zach’s treatment proceeded.
Sadly, just three months later, the medical scheme’s team of lawyers found a reason to stop paying for the treatments. What was hope turned into utter frustration and the de Wet’s once again set off to court to get the medical scheme to uphold the interim court order. This battle quickly turned into a “David vs Goliath” tale.
The family have now been back to court and won two times but each time, the medical scheme’s big team finds another technicality to use in order to withhold funds for Zach’s treatment. What is worse, is now the family have been summonsed to the Supreme Court of Appeal where the medical scheme is planning to absolve themselves of all responsibility for Zach’s treatment costs.
What was just a fight to get treatment for Zach, is now additionally a fight for any child with this rare disease. So much so, that Rare Diseases South Africa has jumped on board to help the family raise funds to cover the rocketing legal bills that are accumulating due to the Supreme Court summons.
They will be heading to the Supreme Court of Appeal (date pending) as well as getting their case heard at the Counsel of Medical Schemes on the 11th of May 2023, this week. Between now and then, they desperately need help to cover the legal bills. Thankfully, the legal team has added substantial discounts so they can hopefully raise the remaining amount. This still sits at just under R300,000, just to hopefully win their fight one last time.
Every person can make a difference for Zach, you can follow his social pages where his parents are raising awareness about Hunters Syndrome or check out the website here. Sharing his story is the first step in helping the family win their fight.
You can help Zach’s family with legal costs via Rare Diseases South Africa where you will be eligible for a Section 18A Tax Certificate for donations over R100.
You can make a direct deposit using the details below or email for more information. There is also a Rare Diseases legal fund via GivenGain here.
Rare Diseases South Africa NPC
FNB
Branch: 250655
Acc: 62562585532
Swift: FIRNZAJJ
Ref: Zach
It’s taken a year of fighting for Zach’s life and it will take a little more but together with people who join the fight every day, every tear and every cent will be worth it!
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