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Monday, May 16, 2022

Boy with rare syndrome continues to thrive with his family’s love, but needs financial support

Cape Town – Three-year-old Zack Amos is one of just 21 people across the world living with a rare eye syndrome.

Zack has been diagnosed with Oculo-Ectodermal Syndrome, also known as Toriello Lacassie Droste Syndrome, and is set to have his third eye surgery soon.

Zack was first introduced to the media two years ago.

Weekend Argus met Zack and his parents, Andrea Amos and Jeninio Hendricks, at their home in Lotus River this week.

Oculo-Ectodermal Syndrome is a rare neuro-developmental syndrome that deals with multi-systems of the eye to the cardiovascular system.

It relates to the variable manifestation of the eye and skin growth abnormalities and developmental challenges and is a mutation of the genes and is not hereditary.

Zack was also diagnosed with Hydrocephalus, which relates to excess fluid in the brain.

Jeninio Hendricks with his son Zack Amos, 3. Zack is one of 21 people in the world who has Hydrocephalus. He also has Oculo-Ectodermal Syndrome known as Toriello Lacassie Droste Syndrome. BRENDAN MAGAAR African News Agency (ANA)

In 2018, surgeons placed a ventriculoperitoneal (VP) shunt inside his head to help relieve pressure.

At three, Zack still sits inside a car seat and is unable to see. He can only see light and sometimes shadows. He is unable to talk properly and prefers liquids to solids.

Zack, who is under the strategic care of doctors and experts at Red Cross Children’s Hospital, has become vulnerable during the global pandemic since he has a compromised and weak immune system.

His mother said Zack saw doctors every second week now as opposed to before the pandemic when he was only seen twice a year.

Zack is one of 21 people in the world who has Hydrocephalus. He also has Oculo-Ectodermal Syndrome known as Toriello Lacassie Droste Syndrome. BRENDAN MAGAAR African News Agency (ANA)

When Zack was born, Amos said doctors told her he had no eyes until he received his diagnosis.

He has since undergone two surgeries on his eyes. The first two were completed in 2018 and last year.

The family is also facing a financial battle.

Zack still wears nappies and drinks formula milk, and often requires medication due to his compromised immune system.

Amos’ brother, Mikhail Amos, 24, was shot and killed after he was struck by a stray bullet in Lotus River in June last year.

Mikhail was a well-known soccer player and student in his community and had supported Amos and Zack.

Mikhail worked for a plastics company.

Amos works shifts at a warehouse to make ends meet.

“It has been really hard since my brother died because he used to help us with Zack’s nappies and milk and medication,” she said.

“I work shifts and we are unable to pay for a crèche which costs between R2000 and R3000 per month.

“We are receiving no assistance from the government.”

Amos said her son still had to undergo more medical procedures and that they had attempted speech therapy.

“Before the pandemic, he used to go every six months, and now we have to go every second week. They are concerned because of his immune system.

“He manages to say words like baba, dadda and his cousin’s name, Hope. It is tough because we cannot afford the schools and that is why I work shifts. He gets sick very easily and despite everything he is a very happy child.”

Dwayne Evans, spokesperson for Red Cross Children’s Hospital, previously confirmed Zack’ condition, adding it was very rare and that it was caused by a mutated gene.

This week, he said people like Zack who had rare diseases, were not yet well-documented regarding Covid-19 and added that they asked parents and guardians to take extra care of them.

“Oculo-ectodermal syndrome is not specifically described to have immunodeficiencies,” he told Weekend Argus.

“That being said, in many ways, the risk of severe Covid-19 for children and adults with rare diseases is not well documented, and we, therefore, do ask patients, parents, caregivers, and guardians to take necessary cautions within reason.”

To offer any financial assistance to the family you can use the following baking details: Capitec, savings account 1672841605, account holder: Andrea Amos.

Weekend Argus

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