He had beaten the odds since the day he was born.
But just months after celebrating his 12th birthday, Johnathan Bezuidenhout passed away in hospital on 11 August.
Jonathan Bezuidenhout celebrates his 12th birthday with his mom, Johleen Bezuidenhout, and her partner Quintin Carter. PHOTO: Misha Jordaan
"It happened too fast. I didn't say goodbye enough because I couldn't let go of his hand," his heartbroken mom Johleen wrote on Facebook.
Johnathan, from Bluewater Bay, Port Elizabeth, suffered from a rare syndrome called mucopolysaccharidosis type 1 (MPS 1), which occurs in just one in a million births.
The genetic disorder is characterised by the deficiency of an enzyme necessary to break down certain compounds in the body. Without it, those compounds build up, causing tissue and organ damage.
In Johnathan’s case it also resulted in stiff joints and abnormal bone and cartilage development.
His condition worsened steadily after having a stroke a year ago.
At his birthday party in April, Johleen warned YOU not to get a fright when seeing him again. “He’s not the Johnathan you used to know.”
The once active little boy had been confined to a pram.
“We nearly lost him,” Johnathan’s grandfather Johan Bezuidenhout (70) said at the time. “But the Lord has pulled him through.
“He’s a little fighter who wants to carry on living. Who are we to throw in the towel?”
Two months before his stroke Johnathan was extremely ill – he was in a coma in an intensive care ward.
“Shortly after he was discharged he started to walk quite well again,” his grandmother Doreen Bezuidenhout (59) says. “But then he became paralysed on his left side.”
Jonathan rides his toy bike along the Swartkops River near his home in 2013. PHOTO: Corrie Hansen
Johnathan’s condition is so rare Johleen (30) wasn't able to find another South African family in the same situation.
The abnormal development of Johnathan’s bone and cartilage made it impossible for him to breathe through his nose, eat normally or speak.
Shortly after his birth doctors had to perform a tracheotomy to help him breathe. Every now and then rattling noises come from his throat where phlegm has collected in his breathing tube. If it wasn’t cleared regularly he could have suffocated.
Johnathan has never learnt to talk, as his mom so fervently hoped he would, because the tracheal tube in his throat is an obstruction. But she had no problem understanding him.
Johleen gave birth to Jonathan in her teens her parents, who live in the nearby Port Elizabeth suburb of Swartkops, have helped to raise him.
Johan is a retired police training officer and Doreen is a caterer at the Humewood police station.
Since his stroke last year Jonathan’s muscles have weakened considerably and everyone in the family has been trained by a physiotherapist so they can massage him twice a day.
“He’s lost all control of his muscles and still wears nappies,” Doreen explained as she rubbed her grandson’s arm.
She and Johan adopted him five-and-a-half years ago so he’d be covered by their medical aid.
It was touch and go for a while after the little boy was diagnosed with gangrene of the stomach. He’d had an operation to fix a hernia caused by gastroenteritis the previous week.
“We nearly lost him three times in the operating theatre,” Johleen recalled. “At one point the doctors said there was nothing they could do for him any more. Then I just kept praying.”
She went to her son’s bedside in hospital, took his hand in hers and said, “You’re going nowhere. Stay with Mommy.”
And Jonathan kept fighting. “He’s here for a purpose,” Johleen said. “To teach us all to be grateful for what we have.”
Ed's note: The YOU team has followed Johnathan's journey for years, and we were devastated when we heard the news today. Our thoughts are with the special little boy's loved ones at this awful time. If you'd like to leave a message of support for them, please comment on our Facebook page, and we'll pass your good wishes on.