Deacon Staak's journey with Apert syndrome continues as family prepare for Wonder film fundraiser

Deacon Staak is a trooper.

When his mum, Ave Staak, was just 24 weeks pregnant, Deacon was diagnosed with Apert syndrome, a rare genetic disorder where the skull prematurely fuses.

Sometimes other organs are also affected due to the way that the skull grows, and hands and feet can often be impacted.

Ms Staak said it’s been a busy few months in and out of hospital.

“We just had further skull surgery in September, which was a fronto-orbital advancement. This is where they basically remoulded the front of his forehead, so his head is no longer long, it’s rounded,” she said.

When it comes to his hands, doctors are trying to work out the best approach.

“He’s had one hand surgery, and they were going to do more this year but they’re still trying to figure out what to do, as they’re quite bad and they’re the worst that the surgeons have seen. So that will be at some point next year,” Ms Staak said, “We’re looking at about four surgeries, and those will be week-long stays because of the complexity.”

“He has been diagnosed with hydrocephalus, so they’ve got to monitor that for the next 6 to 12 months and assess whether or not a shunt will need to be put in – if he does, it will be permanent,” she said.

“Everything went really, really well, and he was discharged in two and a half days. But then he got a staph infection less than a week after, so we ended up being in hospital for quite a while,” she said.

Deacon ended up in intensive care for five days after being treated for his staph infection, Ms Staak said.

“We were in Melbourne for three weeks, and then Deacon’s dad Brad and our other little one had to come home for a week, which was hard on him. They came back up after a week, and decided to stay until we could all come home,” she said.

“His last surgery kind of put him back. He was doing really well development-wise. But he’s almost back to where he was, which is good. He’s doing really, really well,” Ms Staak said.

Despite everything, Ms Staak wants everyone to know that Deacon is like any other kid.

“We don’t want people to feel sorry for us...Deacon is a little trooper,” Ms Staak said,

“We want people to understand that if you see families out and about and they have children who look or act different, that people shouldn’t be afraid...you just want people to say ‘hello’ and just treat them like normal kids”

We just want people to understand that if you see families out and about and they have children who look or act different, that people shouldn’t be afraid.

Ave Staak, Deacon's mum

“We’re in the process of getting him enrolled in daycare. Every time his brother goes, he just wants to be there! So we normally stay there for a bit and he gets to have a little play with the kids,” she said, “He’s such a social little thing.”

The family have been helped previously by Foundation33, and the family hope to return the favour with a movie fundraiser.

“50 per cent of anything we raise will be going to other people. For our first two fundraisers we will be donating the money to Foundation33, who helped us with our trivia night,” she said.

“They help families who, like us, don’t have access to any other foundations to assist. Especially with the rare syndrome that Deacon has, or the rare diseases that other people have. So we want to say thank-you by donating money back to them.

“After that, we’d like to start finding some families in the community that really need the assistance and start donating to them as well,” she said.

For the fundraiser, the Staak family are screening a film with a plot that is very close to their hearts.

Wonder was directed by Stephen Chbosky and is based on the novel by R.J. Palacio, and stars Jacob Tremblay, Owen Wilson, and Julia Roberts.

“Basically, it’s a film about a young boy who was born with facial deformities who is starting school for the first time in the fifth grade,” Mrs Staak said, “So it’s about making friends and teaching people that he’s just like everyone else. We just thought it was perfect for Deacon, and the things he’s going to face in the future,” Ms Staak said.

“We really don’t care if we don’t raise any money, we just want to break-even. We just want people to watch it and be aware,” she said.

Set for 6pm on December 2 at Village Cinemas, tickets to the fundraiser cost $35, which includes a small popcorn and drink.

To help support Deacon’s journey and Foundation33, tickets are on-sale until November 24, and can be purchased by contacting deaconsjourney@outlook.com, on Facebook at Deacon’s Journey, or by calling 0421 710 484.

See also:Deacon’s journey for 2017