The chirpy and cheeky boy was born in April 2016 with Apert syndrome.

The genetic syndrome affects one in 35,000 to 85,000 babies, and sees the skull fuse earlier than it should.

It can also affect the development of hands and feet, with these bones fusing prematurely also.

In Deacon’s case, mum Ave said, his syndrome has affected his hands and feet more than it has his head.

In 2016, he had three operations, the latest was a posterior vault distraction in order to place distractors in his skull, on December 7.

On either side of his head (big brother Curtis calls them “Deacon’s horns”), the metal prongs are turned two times, morning and night.

Mrs Staak said the placement of the distractors helped to seperate the exisiting bone when they were turned, which will help new bone to grow through.

Deacon has also had two operations on his hands, which were almost fully fused at birth.

The next 12 months hold a lot more surgeries, firstly to remove the distractors, and then multiple on his hands to try to encourage more definition between his fingers and thumbs.

It’s going to be trying, but the Mowbray family is ready to face 2017 with smiles, positive attitudes, and warm hearts.

“We wouldn’t have him any other way,” Mrs Staak said.

“I didn’t even want him to have any surgery to start with, because this is him, this is who he is.

“But it was best for him to have it so I’m happy with that, too.”

Deacon’s parents describe him as a cheeky but loveable boy, and dad Brad says his favourite thing to do is “everything he shouldn’t do”.

“He’s a wriggle worm,” Mrs Staak added.

“And he loves kisses. And he loves to give you kisses.

“And he loves to talk. My, does he love to talk.

“Curtis is a very serious child, but Deacon is the complete opposite.

“On his old play gym, there was a penguin. And Curtis was scared of it.

“But you’d be in the kitchen and hear this babbling. And you would come to investigate and it would be Deacon sitting with this penguin, having an argument with it.

“And he’s cluey. You’ll put him to bed, and next minute he will be screaming and screaming. So in you go, and there he is smiling and ready for cuddles, like ‘Aha! I’ve got you in here’.

“He’s a character.”

Most of all, Deacon loves his two-year-old brother Curtis. And the feeling is mutual.

“Curtis was so upset when Deacon went and had his surgery – he was saying ‘Deacon has a sore head’,” Mrs Staak said.

At this stage in Deacon’s development, he’s progressing well.

He is meeting most of his developmental milestones, and he is yet to display any signs of intellectual disability (people with Apert syndrome have a 50 per cent chance of having anywhere from none to mild to moderate intellectual disabilities).

“We’re really lucky,” Mrs Staak said.

“We go to the Royal Children’s Hospital in Melbourne and I look at Deacon and think, ‘you will possibily be able to walk one day, you’re able to communicate with us’, and there’s lots of kids there who don’t have that.”

It is a positivity that began early in Deacon’s life, when Mrs Staak was at week 20 of her pregnancy, and it looked like Deacon could be diagnosed with a fatal disease that would see him die before the age of one. 

Even as the family stares down the barrel of a year of trips to Melbourne, surgeries, and recoveries, each flight and each operation is another symbol of luck and hope.

The Staak family has started a GoFundMe account to assist with the costs associated with treating Deacon’s condition: www.gofundme.com/deaconsjourney.

To follow Deacon’s progress, visit www.facebook.com/deaconsjourney