The Fight for Zach is still underway so dad, Jacques, shared an update and his thanks for all the support the community have given the family to date.
Johannesburg, South Africa (12 December 2023) – The Fight for Zach continues but dad Jacques shares an update about where things stand and what the plans are going forward. In May of 2023, we shared brave Zach’s story and how his medical aid was refusing to support his life-saving treatment.
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 it prevents 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.
Jacques shared an update on how Zach’s case has gone since we last shared his story.
Update on the Fight for Zach.
“Since the date of the initial article on the 9th of May, and following numerous CMS hearing dates and postponements, the battle continues.
It’s been a gruelling year of hope, doubt, frustration, blessing, disappointment, and anxiety as Zach’s case has been heard and deliberated on over this fifteen-month journey. A journey that has been riddled with unexpected turns and rising costs.
That’s not to say that we’ve had to do it alone.
The team of specialists and Rare Diseases South Africa, as well as our amazing legal team have fought a battle that has been as mentally draining as it has emotional. And we could not be more grateful.
As Zach’s condition is a physically deteriorating one, any time lost where he cannot receive his treatment is a step backwards with potentially irreparable consequences. Which is why time is not on our side, but also, why we’ve been extremely humbled to have a beneficiary who has generously enabled Zach to receive his treatment over the last while, during the time that we face the legal onslaught.
However, as incredible as this blessing is, we know it cannot go on very long, not at the immense cost that it comes with.
Aside from this looming deadline, along with the legal fees that are rapidly growing, the cost of Zach’s daily needs, which even by the very least obligation on the part of the medical aid, are not being covered and so come out of our reserve for Zach’s medical fund which has been rapidly depleting throughout this process.
Going into 2024, we have an uncertain journey ahead as things have been left in mid-air. An urgent interim order appeal from the medical aid is only set down for November 2024 which falls short of the “urgent” category by over a year. As well as a CMS process that has come to an unresolved point at the end of 2023 due to the constraints that the CMS face.
Regardless, Zach’s immediate needs persist but so do our efforts. We will be running a number of fundraisers to assist with Zach’s ongoing monthly expenses. We’ll keep updating the Fight For Zach online store with new merchandise and other ways to help. As well as trusting that generous people will continue to reach out and provide those pockets of relief that would otherwise prove to be moments of despair.
We want to sincerely thank everyone who has helped us along this journey thus far, and though it still has a ways to go, we’re certain that righteousness will prevail.”
How We Can Help
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!
by 