SIDS survivor Ashton Jace Burns remembered by family

The Queensland family of SIDS survivor Ashton Burns were told their little boy would die once he was taken off the ventilator doctors believed was keeping him alive - that was nine years ago.

Avah and Sapphira with Ashton Jace Burns laughing together. Picture: supplied

When he was just three months old, doctors said Ashton Jace Burns only had a few weeks left to live, but he beat all odds and lived for another nine years.

“He’s always been the exception to the rule,” his aunt Anna Baumgart said.

He passed away peacefully on March 11, 2023, asleep at his home in Curra – for his whole life he had fought all the odds and kept on living.

When Ashton was three months he had a SIDS related incident that left him with quadriplegic spasticity, complicated with cerebral palsy.

“They (doctors) said he would come off the ventilator and pass away – but he lived,” Mrs Baumgart said.

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Avah and Sapphira with Ashton Jace Burns laughing together. Picture: supplied

The doctors then put him in palliative care, saying, “only a few days and weeks now”, until they finally said to take him home for Christmas. It went on for each age, two, five, and he kept on living, Mrs Baumgart said.

Ashton kept living for a reason.

“The reason was to show us how much we could love,” she said.

“I’d say, ‘I love you,’ and for him to say I love you back, he’d hold onto your finger and squeeze it,” Ashton’s grandfather Rick Burns said.

“Sunday was our cuddle days,” he added.

Rick Burns with his grandson, Ashton Jace Burns. Picture: supplied

Ashton was well-loved and touched everyone he met with his cheeky, outgoing demeanour.

His big beautiful eyes and long lashes “could just heal your heart”, his grandmother Jill Burns said.

“It didn’t matter where we were, even just down the street, he drew the crowd and they would come to him and say hello, and please talk to me,” she said.

Well-known in the community, Ashton had a fundraiser in 2017 and the family was able to buy an accessible van for his wheelchair.

He also had a remote control mini car with a seat fashioned for him. He would ride around the backyard with his trusty dog, Suzy, and younger twin sisters chasing him around while his dad, Steven Burns manned the remote.

Ashton’s life was a celebration and joy, and while he lived with his grandparents, his dad, who lives in Hervey Bay, was never far away, visiting on weekends, or taking him fishing in between any hospital visits.

Ashton Jace Burns would often go fishing with his dad, Steven Burns. Picture: supplied

“Cherished son of Steven and Sally. Loved brother of Avah and Sapphira. Treasured grandson of Rick and Jill. Adored nephew of Anna and Josh,” his funeral notice said.

Ashton’s funeral service will be held in the Cooloola Coast Crematorium Chapel, 236 Brisbane Road, Monkland on Friday,March 24, 2023, at 10am.

There will be a wake at the Curra Country Club after the service.

“It is a celebration of his life and his time here. I've asked everyone to wear bright colours and incorporate dinosaurs into their outfit as a tribute to him,” Mrs Baumgart said.