Tributes flow for 8-year-old Riley John Knott from Kingaroy

The grieving mum of a “beautiful and brave” eight-year-old Kingaroy boy who battled a rare disorder has shared a touching tribute after he tragically died in her arms.

The mother of a ‘beautiful and brave’ 8-year-old has paid tribute to her son who lost his battle with a rare neurodegenerative disorder earlier this year.

A Kingaroy family is grieving the loss of their “funny and caring” eight-year-old boy, who died in his mother’s arms following a lifelong fight with a rare genetic condition.

Riley John Knott was diagnosed with Pontocerebellar Hypoplasia, a rare neurodegenerative disorder caused by genetic mutations, when he was six months old.

He died from a chest infection on May 22, 2023.

Riley’s mother Sharna McCulloch said he was a very funny little boy who loved books, swimming and going outside.

“Since his immune system was very compromised, our favourite thing to do was to sit inside cuddling with his little brother Parker and watching TV,” Ms McCulloch said.

“He was obsessed with watching the news in whatever language and we would read his favourite book The Wonky Donkey every morning.”

From 2017 to 2020 Riley spent most of his time at the Queensland Children’s Hospital in Brisbane before they moved back to Kingaroy in 2021 to be closer to family for support.

Family friend Kirsty Dahlin said Riley often suffered from lung infections, seizures, dystonia and was nutritionally supported through a tube.

“He remained on oxygen at most times while Sharna invested her utmost care and love to her precious boy,” Mrs Dahlin said.

“She pushed through fatigue and faced the most challenging moments by never giving up on her boy.”

Sharna McCulloch said Riley was a very funny little boy who loved books, swimming and going outside. Picture: Contributed.

On May 16, 2023 Riley was taken to Kingaroy Hospital with a chest infection and on May 21 2023 he was flown to the Queensland Children’s Hospital.

Mrs Dahlin said Riley was exhausted and was taken to the intensive care unit as he was struggling to maintain his own airways.

“On the morning of the 22nd, Sharna was holding Riley and could see that he couldn’t fight this anymore,” Mrs Dahlin said.

Riley died at 6pm that evening in his mother’s arms at the Hummingbird House, Brisbane.

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Ms McCulloch said despite his lifelong health complications her son was a happy child who loved rock’n’roll music and superheroes.

“He would be happy if he liked something and cry if anyone around him was crying,” Ms McCulloch said.

Mrs Dahlin has launched a fundraiser to help the family after Ms McCulloch was unable to work.

“I know my friend has been through more heartache than anyone would normally endure in a lifetime and we want to help in her time of need,” Mrs Dahlin said.

“Please help us support her through this difficult time.”

Originally published as Tributes flow for 8-year-old Riley John Knott from Kingaroy