Updated 26 November 2018

Boy with rare genetic disorder that left him permanently hungry dies

It’s every mother’s worst nightmare – seeing your child suffer more with each passing day but there’s nothing you can do for them.

It’s every mother’s worst nightmare – seeing your child suffer more with each passing day but there’s nothing you can do for them.

For eight years this was Zola Benjamin’s reality.

When he was just three years old her son, Caden, was diagnosed with Prader-Willi syndrome, a genetic disorder where the sufferer’s appetite is never satisfied. Basically, their hunger is permanent no matter how much food they eat.

“There are days where I feel, ‘Okay there might be some hope. Things could get better’. But then the truth is it never becomes easier,” Zola told YOU last year.

“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.”

And doctors were too. At age 11 Caden’s condition had progressed to the point where his organs couldn’t handle the strain and he had trouble breathing. He spent most days attached to an oxygen tank.

On 15 November this year he died at the Steve Biko Academic Hospital in Pretoria.

Zola is devastated.

“It felt as if my life had ended,” the distraught mother says of the moment her son took his last breath.

“My heart has a big hole inside of it. He was my whole life and my reason for wanting to live. I can’t go on without him. The pain is indescribable. No mother should ever have to bury her child. I never thought he’d go so soon.”

Zola doesn’t wish to disclose her son’s weight at the time of his death. Last year, at just 10 years old, Caden tipped the scales at a staggering 90kg.

He wasn’t an overweight baby but born prematurely and weighed just 1,2kg at birth.

Zola says she stayed in hospital with her baby for nearly two months before doctors were prepared to discharge him.

She never picked up anything strange in him although he gained weight fast.

At three years old Caden weighed 40kg and Zola decided to have tests done.

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

Cushing Syndrome occurs when someone is exposed to high levels of cortisol over a long time, its most common symptoms being weight gain and obesity.

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). Doctors also decided that Caden should have a tracheostomy, in which a tube is inserted in the windpipe to enable breathing.

Caden Benjamin

But the family never received 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.”

Since we spoke to her last year Zola, who lives in Standerton, Mpumalanga, Caden underwent hip surgery and developed the skin condition cellulitis, which was “very painful”.

“The effects of Prader-Willi syndrome led Caden to have heart and kidney failure, diabetes, water retention and even made him depressed. His body ached and he was in constant pain. His suffering was immense.”

Seeing her son suffer day after day was heartbreaking, Zola tells us.

“I felt helpless as there was nothing doctors could do for him. Watching him in pain made me feel totally helpless.”

One Sunday evening in November, Caden had to be rushed to hospital. His heart was weak, his kidneys failing and he struggled to breathe. Four days later, around 1pm, doctors gave him morphine for the first time. About 30 minutes later he died.

Because her son required around-the-clock care, Zola couldn’t have a full-time job. She tried selling samosas, second-hand clothing and made food to order to help pay the bills but financially it’s been tough.

Caden Benjamin

“The hospital was very far away and private transport costs a fortune. He couldn’t be exposed to germs on the bus. And his out-of- hospital expenses were enormous. As his condition deteriorated, his expenses would increase.”

Zola doesn’t know how she’ll pay her medical bills and give Caden the send-off he deserves. But with the help of her dear friend, Gila Sacks, a funding page has been set up on BackaBuddy, where local and international donations can be made.

Even though she’s struggling to cope with the loss of her son, Zola is grateful for the support of family, friends and even strangers.

“My family and friends have been there for me. They are also mourning. Everyone loved and cared for Caden. He touched so many hearts through the media and social media.”




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