The parents of a once-bubbly Mandalay teen are appealing to the public to help their only son, who was recently diagnosed with mitochondrial disease.
Marlon Pienaar, who turned 13 on Valentine’s Day, was born a “normal, healthy boy”, according to his mother, Emsily, 32.
Then in 2016, he was diagnosed with epilepsy and had seizures frequently until September 2019, when he was hospitalised for a stroke-like seizure.
“We spent a long time in hospital and then in October they found the cause of these seizures,” says Emsily.
Marlon suffers from MELAS syndrome (mitochondrial myopathy, encephalopathy, lactic acidosis and stroke-like episodes), a progressive neurodegenerative disorder caused by mutations in mitochondrial DNA.
His mom explains: “The disease is a genetic disorder that robs the body’s cells of energy, often causing multiple organ dysfunction.”
Emsily knows her boy’s condition is terminal and is praying for a miracle.
“There is no cure for his disease,” she says.
“This condition is like a disposable battery, when it runs flat, it can’t be charged.
“At least the treatment he is on is helping.
“We are aware that the disease is fatal, but we are also trusting God for a miracle a breakthrough.”
The emotional mum says her son was completely “normal” before the disease struck.
“He’s a spontaneous, very friendly, funny, kind-hearted boy,” she says.
“He has the most beautiful smile and loves making jokes and visiting his neighbours.
“People call him the mayor of our street.
“It’s very emotional for us to adapt to this disease, especially because we don’t know about anyone else who has it, so we have no experience in caring for him, but we will try.”
Emsily and her husband are both unemployed as they have to take care of their son.
“He needs 24-hour care. We are appealing to the public to help us make our son comfortable. He can’t speak or walk and is bedridden or in a wheelchair,” she says.
Marlon needs a Ribble mattress and a suction machine.