'He woke up paralysed': Rare disease attacks six-year-old Kobe Duck

Kristie Duck and her son Kobe, 6, who has a rare disease that has left him paralysed.
Kristie Duck and her son Kobe, 6, who has a rare disease that has left him paralysed.  Photo: Simone De Peak

Kobe Duck had almost finished his first year of school.

He was a sporty kid who loved his fishing, loved his camping, and loved his soccer. He was named "Player of The Year" after his first season for the mighty Morriset Strikers near Newcastle in NSW, and was the kind of child who would pick building bike jumps and mud pits over playing video games.

But in November 2018, Kobe went to bed a fit, healthy, five-year-old, and woke up paralysed and struggling to breathe.

Physiotherapist Meg Lombard and Kobe in the John Hunter Hospital.
Physiotherapist Meg Lombard and Kobe in the John Hunter Hospital. Photo: Simone De Peak

"That's what makes it so scary. He literally just woke up paralysed," his mother, Kristie Duck, said.

In the days before the "devastating" turn of events, Mrs Duck said Kobe had a bit of a sniffle and a cough, and had been off his food.

"He complained of a sore neck and started to get temperatures, so I gave him some Panadol," she said. "But the next day he was the same - high-ish temperatures and complaining of a sore neck. So I took him to emergency, thinking he might have had meningitis. They reassured me it wasn't meningitis, and sent us home."

Mrs Duck put him to bed with some paracetamol and kept an eye on him.

"At about four in the morning he got up and met my husband in the hallway and said, 'I have a floppy neck', but he went back to bed.

"The next morning he was crying in his bed, saying he couldn't get up. He couldn't lift his head off the pillow."

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Kobe's breathing had become laboured, and he was rushed to John Hunter Children's Hospital in Newcastle where his paralysis worsened.

More than six months later, Kobe remains a resident of the hospital, diagnosed with acute flaccid myelitis - a rare disease that affects the spinal cord and caused, in his case, by a "close relative" of the polio virus.

It had affected his ability to eat, to breathe, and to swallow; the movement in his arms, and the muscles that support his back.

He uses a wheelchair to get around the hospital, a brace to support his neck and his back, and a ventilator to breathe.

Kobe's sixth birthday, Christmas, New Year's Eve, Easter, his older brother and sister's birthdays - had all been celebrated at the hospital.

"It has been devastating," Mrs Duck said. "Life changing, for him and the entire family. I haven't heard his voice for six months.

"He can mouth words. But we can't hear him. We're getting better at lip reading. But there are words we don't understand, and he gets frustrated.

"I'd give anything to hear his voice again."

Mrs Duck said there was a lot of "don't knows".

"We don't know where the end point is. We don't know how much recovery he will get," she said. "But the rehab has been helping. He is able to walk short distances now.

"In the beginning we didn't think he would ever breathe again, walk again, on his own. So he is making small gains."

Kobe's doctor, paediatric neurologist Dr Rob Smith, said acute flaccid myelitis was "incredibly" rare.

"In 25 years in this job, I've only seen two children with this severity, and Kobe is one of them," he said. "It is very similar to what we used to see in polio. It is a rare complication of infection with that virus, and it can affect the nervous system. Over the years, we've probably seen half a dozen children here with it - most with minor forms."

Dr Smith said a lot of children get the virus and it did not affect them.

"This is incredibly rare. Most people who are exposed to that virus will not know they have had it, and it will cause minimum symptoms," he said.

"But every now and then someone gets this really bad response and gets an infection in the nervous system.

"We don't know why some children get it and some don't. It does tend to come in epidemics, so our colleagues in Sydney will be looking out for this. Kobe is the first reported this season with this pattern."

Dr Smith said in helping Kobe, they planned for the worst, and hoped for the best.

"He has certainly made some gains," he said.

"We think Kobe will end up with residual disability, but our next step is trying to get him off his ventilator.

"There is no active treatment for this virus now that it has done the damage, although he had fairly aggressive treatment at the very beginning.

"But the virus has come and gone now, and this is what it has left in its wake."

Mrs Duck said either herself or her husband, Michael Duck, was always at the hospital with Kobe.

It had meant they had not been able to work as much as they had prior to Kobe's illness, and they needed to make some modifications to their home to accommodate Kobe's new needs.

There is a fundraiser on June 2 at Dora Creek Workers Club from midday.

"There will be live entertainment and raffles," Mrs Duck said.

A Go Fund Me campaign, called Bring Kobe Home, has also been set up to support the family.

"Don't take anything for granted, you don't know what the future holds," Mrs Duck said.

"Kobe woke up paralysed, and that's something you can't prepare for. You feel blessed to get three kids to the age they were without any problems, and then something like this can devastate you overnight.

"It has shifted our priorities.

"Family time has always been valuable, but even more so now for us. Cherish every moment with your children, your family."

Newcastle Herald