Mpumalanga - Caden Benjamin reaches for a container of lip balm on the table.
Immediately, he sinks his teeth into it, and starts chewing off the plastic, relentlessly.
The 10-year-old eats anything he can get his hands on. “At one point, Caden was eating toilet paper. He’d eat rolls of it,” said his mom Zola.
“Actually, he’d eat any paper he would find in the house. If there’s nothing for him to eat, he’ll scrape together the dirt he finds on the floor and eat that.”
Caden, who lives in
Standerton in Mpumalanga, suffers from a rare genetic disorder called Prader-Willi syndrome which results in a constant sense of hunger.
The rare, incurable disorder affects about 20 000 people worldwide and results in physical, mental and behavioural problems.
To make matters worse, people with Prader-Willi Syndrome need less food than their peers because their bodies have less muscle and tend to burn fewer calories.
“At three years old he was 40kg and at that time, we didn’t know what was wrong with him,” said Zola.
“We went to a number of doctors and no one could tell us what was wrong and why he was gaining so much weight.”
Eventually, a doctor at Steve Biko Academic Hospital in Pretoria ran further medical tests and diagnosed Caden’s illness.
Caden Benjamin with his mother Zola. Picture: Nhlanhla Phillips
Zola had never heard of the disease before.
“I was told that this was a syndrome which is fat generating and that there was no cure for it.”
For several years, Caden would eat a meal every hour to help cope with his disorder.
However with his weight spiralling out of control and his health being seriously jeopardised, doctors have advised Caden go on a diet.
The child weighs 90kg and wears extra-large men’s clothing.
“Normally he would start off the day by eating four slices of cheese toast and then an hour later he would drink Coke and eat leftover food from the night before,” said Zola.
“Then at lunch he’d eat two large pieces of chicken. He’d eat hourly for the rest of the day.”
Now that Caden is on a diet, Zola has had to lock all her kitchen cabinets and her fridge and hide all food items in the house.
“He’s really battling. I feel so terrible... but the doctors said that if I want to see my son alive, then he has to go on a diet.”
Caden isn’t able to move around because of his weight, and struggles to breathe.
Several years ago, he was forced to undergo a tracheostomy and he now breathes through a tube, which is inserted into his windpipe.
Apart from three hospital visits a month, Caden requires constant attention.
His mother has been unable to work because she needs to look after him.
“Each and every day is a battle,” she said.
“I have to check up on him all day and night.”
The syndrome also affects his behaviour and mood swings. “Sometimes, he attacks me.
“He hits me, chokes me and flings me around.
“His strength is something I can’t control and so there’s nothing I can do. But it’s part of the disease and something I need to understand.
“As a mother, it’s difficult, but I try and do what’s best for him.”
Rare Diseases SA said it was aware of at least 50 patients who have the condition.
“Prevalence internationally is listed as 1 in 25 000 live births so we are sure that we are missing lots of patients,” said Kelly du Plessis, its founder.
Dr Engela Honey, a paediatrician based at the department of genetics at the University of Pretoria, said Prader-Willi syndrome is relatively rare.
“The most important reason for the non-diagnosis of Prader- Willi syndrome is the lack of awareness and the fact that doctors and other medical health professionals don’t know about the syndrome,” said Honey.
Zola struggles financially. “We’re battling quite a bit. Caden has a lot of medical expenses and I struggle to pay for them because I can’t work.
“I try to sell food from my home but it doesn’t bring nearly enough money to look after my son.”
Her son suffers bouts of depression because he is unable to live like a normal child.
He spends all his time either on the couch or in bed.
“Sometimes he’ll just break down in tears and tells me he wants to go and play with the other children outside.
“But he is unable to do that and there’s no way I can help him.”
Recently, doctors informed Zola that Caden’s health had severely deteriorated and there was nothing more they could do for him.
“The doctors have told us that his major organs are taking more and more strain because of his weight.
“I pray every day that Caden gets well so he can be normal like other children and do things that normal children do.”