Jacques and Michaney de Wet will continue to fight for their son
Parents often consider their children their world and would go to the ends of the earth for their children, but seeing them struggle, particularly with a problem, is a difficult thing to witness.
Jacques and Michaney de Wet from Brackenhurst are battling to get their medical aid to pay for their son Zachary’s treatment despite this condition being a prescribed minimum benefit.
The family feels that given the severity of the condition alongside their medical aid benefits, denying Zach his right to health is unethical, and a fundamental human rights violation.
Zach, as they call him, has been diagnosed with a rare disease called Mucopolysaccharidosis Type 2 (MPS II) which is also known as the Hunters Syndrome in March 2021.
Since diagnosis, the family has been struggling to get their medical aid on board to approve the treatment Zach needs. The Alberton Record had the opportunity to meet Zach and his family to find out how he is doing and how the community can help.
Zach’s medical journey so far
Michaney said that she had a fairly normal pregnancy.
“I had my ups and downs, but nothing major which could have alerted us that something is wrong,” she said.
In March 2020, a beautiful and healthy baby boy was born who immediately stole the hearts of his parents and big sister.
Zach has had numerous complications as a result of his condition, including recurrent ear and sinus infections. When he was 10 months old, he received his first set of grommets.
“Dr Duane Mol from The Eye and Ear Clinic in Meyersdal did his grommets and he commented that he saw something wrong, and that it might be Mucopolysaccharidosis, but that it was extremely rare and may not be the case,” said Michaney.
When Zach had to go for his second set of grommets, Mol referred them to Dr Ashley Jeevarathum, who requested further tests be done. Results from North-West University Laboratory for inborn errors of metabolism indicated a diagnosis for MPSII, which was further confirmed via genetic studies at an overseas laboratory.
“With the whole process as parents, we hoped for the best for Zach just to be healthy and we saw this as just an extra precaution just to make sure he is alright,” they said.
Zach has also had his adenoids and tonsils removed to make breathing easier, as this is a further complication of MPS. Zach also has astigmatism in both of his eyes and has been wearing glasses since the age of two.
No time to wait
Due to the nature of his disease, Zach regularly visits his team of specialists, including a neurologist, cardiologist, pulmonologist, opthalmologist, and occupational therapist, all of whom are supportive of Zach receiving enzyme replacement therapy to treat his condition.
During this time of trying to get medical aid approval, two of Zach’s heart valves have thickened and valve leaks have been detected, meaning the valve doesn’t close completely.
This makes him more vulnerable to bacterial infections. Zach’s liver has also already enlarged at this stage.
Michaney states, “Knowing that there is a treatment available for my son which would help alleviate his health complications and prevent further deterioration fills my heart with hope.”
The therapy allows for appropriate clinical management of the condition and largely prevents further deterioration and reduces mortality. Without treatment, Zach is not expected to survive another 10 years.
“As parents, we understand the medication is expensive, but we don’t have the luxury of having options. This is the only treatment available in the world for our son and pricing shouldn’t be all that is considered. How can you put a value on your child’s life?
“Our medical aid seems to find a new reason every time for not granting us the authorization Zach needs to keep him alive even though it is a prescribed minimum benefit and should be covered in full,” said Michaney.
The de Wet’s have been assisted by Rare Diseases South Africa, an NPO dedicated to ensuring that persons with rare diseases and congenital abnormalities have greater recognition, support, better healthcare and a better overall quality of life.
“This organisation has just been so amazing and helpful and has provided us with the necessary knowledge and advocacy support to take this matter further,” said Jacques and Michaney.
Taking the matter further
With the medical aid refusing to pay for their boy’s treatment, they have now started to raise funds.
“We will do anything for our son, but we also want to create awareness of the disease and to help others and to inspire them to keep on fighting.”
The parents need to raise about R150 000 to assist with Zach’s complex medical needs and to get the advocacy off the ground.
This is a very urgent matter as Zach’s heart is not strong and without treatment, it will only get worse.
“Together with RDSA, we intend to tackle the medical aid system and ensure that medical aids fulfil their obligation to members to cover the treatment. “Time is just not on our side and our son’s life ultimately hangs in the balance.”
Show your support
Amongst having to pay for medical treatment, and continued monthly expenses to keep Zach as strong as possible whilst they fight for treatment, it’s understandable that this family is on a tight budget.
“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.
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.
