Baby Henry was never able to open his eyes, feed or even cry.
He became unwell soon after birth and was flown to Westmead Children's Hospital, where he passed away at nine days old in 2016.
On Sunday, his family will honour his memory when they do the Bloody Long Walk from Redhead to Newcastle's Foreshore Park.
The 35-kilometre walk is held to raise funds for research into mitochondrial disease, also known as mito, and to support patients and their families.
Mito is a genetic disease that affects one in 4300 people. It has many forms, can affect anyone at any age and is often terminal.
Henry was born in Wagga, where his family still live.
His parents Nicole and Carl Baldry remember him "in a lot of ways".
They do so with his three brothers and on his birthday when "we share cake and light the fire pit as a kind of birthday party", Mr Baldry said.
They are determined to get to all the Bloody Long Walks eventually - they're held at 11 places across Australia.
Each year, they travel to do one of the annual walks to raise awareness for "a disease that we had not even heard of before Henry became unwell".
"This year we are heading to Newcastle. We have family and friends in the area, so it is an excellent chance for some catch-ups too," Mrs Baldry said.
"We figure the more places we get to, the more opportunities we have to share Henry's story and spread awareness.
"We walk so that people living with mito get the support they need and deserve. Maybe one day, we will save a life."
Mrs Baldry wrote a picture book, titled Mito Warrior, as a way to "share his story and raise funds".
"The loss of a child is like nothing you could ever imagine, nothing I would wish on anyone," Mrs Baldry said.
"We had to make decisions that were beyond anything that a parent should have to consider and watched our world warp, change and fall apart."
She said family, friends and the community "were incredible while we were in hospital and on getting home".
"We are fortunate to have such incredible humans in our corner," she said.
Initially, they thought his symptoms were from a narrowing of his aorta.
"But after this was repaired, he didn't improve," she said.
"We were sitting at the hospital with him, before his surgery, taking pictures and tiny videos and discussing how incredible it would be for his 18th birthday to look back on this time and say, 'look where you started'.
"It wasn't until the nurses sat us down and said, 'your baby will not be able to go home with you', that it even occurred to us that this was a possibility.
"It took almost 12 months after his passing to get a diagnosis. We had been told it was likely that he had mitochondrial disease, but the confirmation took a long time."
