The 15th of May is Mucopolysaccharidoses (MPS) Awareness Day and SA honours Zach, whose family are fighting for his medical rights.
South Africa (17 May 2024) – Rare Diseases South Africa recently shared a post honouring all the little South Africans that have been diagnosed with Mucopolysaccharidoses (MPS) for MPS Awareness Day which takes place on the 15th of May. One of those South Africans is Zach.
Zach has Mucopolysaccharidosis Type 2 (MPSll) or more commonly known as Hunter syndrome. He first popped on our radar a year ago when we learned his parents were challenging their medical aid provider for help in covering the costs of his treatment.
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.
Hunter 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 build up can be fatal as they prevent the body from functioning correctly. Enzyme Replacement Therapy is how it is treated.
To combat the medical aid’s refusal to cover the costs, the family with the support of Rare Diseases South Africa have gone to court. The legal battle has continued to this day with little to no resolution as of yet. The goal of the legal action is to have his treatment listed as a prescribed minimum benefit.
Rare Diseases South Africa has continued to support the family in this legal battle, and thankfully, HJW Attorneys have been working pro bono on this case. However, there are other legal fees that need covering, and the hope is that MPS Awareness Day could help raise awareness for not only Zach’s case but also the president it will set for other children who also need this treatment.
“Our legal fees to date on this matter continue to climb. Whilst our advocates in the high court process are Pro
Bono, the Council for Medical Schemes process isn’t. This works in our opponents’ favour. With a massive legal firm on retainer, they know that the longer they delay the process, the less likely we will be to be able to see it through, due to the climbing costs.With NHI being signed into power today, we can expect a lot more cases like this as we fight and lobby for improved access to services for those of us in the unfortunate position of not quite fitting the healthcare “mould” – Kelly Du Plessis
If you would like to support this cause, you can make a donation to the Rare Diseases SA legal fund: https://www.givengain.com/campaign/legal (and qualify for a Section 18A).
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OR: You can make a contribution to our legal fees directly to the attorney trust account.
Banking Details:
Account Name: HJW Attorneys Trust
Account: 627 475 134 49
Bank: First National Bank
Branch Number: 204809
Ref: M02024
“Together, we can make a difference. Let’s stand in solidarity with the Zach’s of the world, and continue to advocate for those of us who are left behind in healthcare”
Every person can make a difference for Zach; you can follow his social pages where his parents are raising awareness about Hunter’s syndrome or check out the website here. Sharing his story is the first step in helping the family win their fight.
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