Morbidly obese boy’s rare disease makes him eat anything – even toilet paper

By Kim Abrahams
21 July 2017

At just ten years old, Caden weighs a staggering 90 kg.

It’s the heartbreaking reality she has to face every day – her son suffers from an incurable disease that’s slowly claiming his young life.

Pain and distress are evident in Zola Benjamin’s voice, as the single mother-of-one chats to us from Standerton in Mpumalanga, where she lives with her mother, Rose Manickum, and nine-year-old son, Caden.

“It’s extremely difficult. There are days I wish I could just end Caden’s and my life,” Zola admits distraughtly.

“Then there are days where I feel, ‘Okay, there might be some hope. Things could get better’. But the truth is it never becomes easier.”

Caden suffers from Prader-Willi Syndrome and was diagnosed when he was just three years old.

Prader-Willi Syndrome is a genetic disorder where the sufferer’s appetite is never satisfied – their hunger is essentially permanent no matter the amount of food they eat.

Caden’s hunger was so extreme, he’d eat toilet paper, dirt or lip balm cases just to satisfy his appetite.

At just ten years old, Caden weighs a staggering 90 kg and spends his days attached to a ventilator, as he’s unable to breathe without it.

caden 1

A behavioural problem is one of the most common symptoms of the disease and Zola admits that it was an issue with Caden in the past.

“His ability to move has been made difficult for him because of his weight. But in the past, he used to hit, pull and push me around if he doesn’t get his way.”

Caden’s bouts of anger made it difficult for Zola to control what he ate and the size of the portions, but she now follows a diet, set out by a dietician, as far as she can.

The financial condition she finds herself in makes it difficult for the 38-year-old mother.

“I can’t work because I have to care for my son full time. All I have to rely on is the R1 500 I get in government grant for Caden,” she says.

But she has a phenomenal support system, Zola adds.

Her parents have been instrumental in helping her make ends meet.

Sadly, she recently lost her father, Elvin Gordon Benjamin, who she says was their ‘right-hand and sole supporter’, but Rose and her friend Gila Sacks have unfailingly stood by her side.

“Since losing my dad, things have been very difficult for us. Gila tries to help us in getting donations as far as she can and my heart bursts with gratitude for her.

“I mean, with Caden on a ventilator 24/7, our electricity usage is awfully high so I can’t afford all the expenses regarding his needs.

“We live from hand to mouth.”

Caden was born prematurely, weighing a mere 1,2 kg.

Zola says she spent nearly two months in the hospital with her little boy before doctors were satisfied enough to send him home.

The mother never picked up anything strange in her son, although his weight gain was very progressive.

At three years old, Caden tipped the scale at 40 kg and it was then that Zola decided to have tests done.

caden 3

“The doctor said he suspects Cushing Syndrome but it was never confirmed.”

Zola took her son to Steve Biko Hospital in Pretoria, where doctors performed a tracheostomy and adenoidectomy (procedures where the tonsils and adenoids are removed).

They took the decision to have Caden undergo a tracheostomy, in which a tube was inserted in his windpipe to enable breathing.

But the family still never had a diagnosis.

“We went on to think that Caden was morbidly obese.

“A year later, we went for extensive blood tests. It was only then determined that Caden had Prader-Willi Syndrome.”

The years that followed have been tough for Zola.

Caden has never attended school and even though she’s tried to home school him, Zola says she stopped because she found it impossible.

It’s one of the reasons the 10-year-old’s development is delayed.

caden 4

Apart from the fact that she’s her son’s continuous carer, she has to deal with prolonged stares of horror, offensive remarks and comments that she’s a bad mother every time they step out in public.

“It’s the reason I prefer to keep Caden at home. People can be really horrible sometimes.”

Even sharing her story with the media has resulted in backlash from the public.

“People have blamed me for killing my son. They believe I’m the one feeding him to his grave. But I am doing the best I can.

“It’s increasingly difficult with the growing cost of living and the fact that healthy food, in particular, is so expensive.”

Zola adds that her most recent visit to the doctor resulted in even worse news for Caden: his organs are taking strain.

“The right-side under his heart has a lump forming there. Doctors aren’t sure whether it’s a tumour but further tests will be done.”

She’s desperate and says that any donations are welcome.

“This my plea for help. I want to help my son and make his life easier for him. But I’m limited in what I can do for him.”

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