The family of six-year-old Michael Minnaar is devastated after he lost his battle against Granulomatous Amebic Encephalitis (GAE) on June 22.
According to his mother, Lilian Minnaar, a teacher at Hoërskool Dr EG Jansen, the nightmare started in December last year when they noticed him struggling to walk.
“It was almost as if there was a thorn in his left foot. We took him to our local GP, who could find nothing wrong.
At the beginning of January, he deteriorated so much that he could not walk unassisted and had a urine retention problem.
“We took him to another GP, who referred us to a paediatrician. The paediatrician immediately sent us for an MRI scan,” said Lilian.
The MRI showed something resembling a tumour.
“They referred Michael to the neurosurgeons at Nelson Mandela Children’s Hospital, where the doctors removed the mass on February 15. They sent the histology for testing.”
What came back devastated the family. Their beloved boy was diagnosed with Granulomatous Amebic Encephalitis (GAE) caused by Balamuthia Mandrillaris.
“It is a free-living single-cell organism found in soil, freshwater lakes and dams. It is an extremely rare, often fatal and life-threatening disease with a survival rate of less than 10%,” she explained.
Lilian described Michael as a loving boy who always smiled.
“Michael did not make friends easily, but once you were in his inner circle, he loved you with all his heart. He loved playing outside, especially in the garden. It is sad that he possibly contracted the disease in the sand, his favourite place to play,“ she added.
Lilian received the following message from Michael’s occupational therapist, Jade Flood: “In my job, I meet hundreds of children a year, but now and again, I come across a child who touches my heart. Michael was one of those kids.
She continued: “From his little voice saying my name when I walked past, to him teaching me to build my first-ever Lego and our many broken conversations in both English and Afrikaans, spending time with him was the highlight of my day. Although he often complained in the beginning, I loved that eventually, he would get excited about our occupational therapy sessions. I would hear him asking ‘Gaan ons speel?’ the moment I entered his room.
“I loved how he learnt to use the call button to get the nurse’s attention when he was lonely, how he convinced a group of medical students that if they played with him first, he would then allow them to examine him and that no matter what time of day I came to see him, there were always tons of Lego needing rescue from underneath him.
“I will miss our wheelchair trips around the hospital with him constantly asking for speed boosts, fighting all the ‘monster’ benches in the corridors and then searching for a specific toy he had lost somewhere in his room (most often something related to Spider-Man, Mario or minions) when we got back to the ward.
“Michael was special to all of us at NMCH. We will always remember and love him.”
His memorial service is on June 30 at Kerk Wat Werk in Boksburg North at 11:00.
Michael leaves behind his parents, grandmother, friends, and family.
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