Big smile for brave little boy in a world of pain
ZACKARY Walton's infectious smile will be wider than ever in a few weeks - but first the brave youngster has to endure the daily pain of having his jaw stretched.
The five-year-old has had a mechanical device inserted into his jaw at the Women's and Children's Hospital and it is being wound out 1mm a day, for 20 days.
It is hoped the procedure will bring his lower jaw forward by about 2cm to a point where he no longer needs to breathe through a tube inserted in his airway from his neck.
Medical staff are working from a 3D model of his skull constructed from CT images in the delicate effort to open his airway.
The jaw distraction procedure involves surgery to make a cut on both sides of the lower jawbone, insertion of the distraction device, then carefully winding it open gradually to separate the bone.
The jawbone grows to fill the space as the procedure is repeated, lengthening the lower jaw and opening the airway.
Zack was born with the rare Treacher Collins syndrome, a genetic disorder that prevents the skull, cheek and jawbones from fully developing.
He also has grade 4 microtia and atresia, which means he has no ears.
However tiny hearing aids and regular one-on-one therapy from the Cora Barclay Centre means he can talk and understand language.
He has just started Reception at Charles Campbell College with his four older siblings.
His mother, Sarah Thomas, said Zack was coping well with mainstream classes while having ongoing work with Cora Barclay staff.
"He has only had two weeks in Reception and absolutely loves it, and is now doing school at the WCH while he is having this work done," she said.
"He's doing really well through this, he says the pain is not too bad and it has been more a tightening feeling as they gradually wind his jaw out but we'll see how it goes.
"He was born with his lower jaw too small which obstructed his breathing so needed a tracheostomy - this procedure hopefully will open his airway enough so he can breath normally through his mouth."
Zack won significant public support in 2014 when The Advertiser published a story about his plight, which resulted in the government reversing a decision to stop funding a nurse one day a week to help while he was aged just two.
He then received a huge boost to his self confidence later that year when inspirational Englishman Jono Lancaster visited.
Jono, then 30, has the same condition and with his buff biceps, rippling six pack and look-at-me hairstyle showed Zack life with the syndrome can be good - and it can be cool to be different.
"I grew up with Treacher Collins and I kind of felt like I was on my own and I felt like I was the only one out in the world that was like me," Mr Lancaster told The Advertiser during his visit.
"People are lucky enough to win the lottery or they become professional footballers, doctors, lawyers but (I thought): 'Why did I have to end up looking like this?'"
"I would have loved to have met somebody like myself when I was younger ... somebody who had got a job, got a partner and said to me 'these are the things you can do, you can achieve'."
A crowd-funding appeal was established in an effort to raise money to send Zack to the US for a difficult procedure where his ear canals would be opened and rebuilt, plus new artificial ears covered with a skin graft, which could mean close to normal hearing without hearing aids.
That is still the long term plan although his skull is too thin for such surgery yet.
In the meantime, Zack is looking forward to breathing through his mouth rather than a tube out his neck - and getting back to school and on with an exciting life.