Matthew Barnes regularly goes to the gym to strenghthen his airways and muscles after being born with a medical problem. Photo: Chris Ison / The Morning Bulletin
Matthew Barnes regularly goes to the gym to strenghthen his airways and muscles after being born with a medical problem. Photo: Chris Ison / The Morning Bulletin Chris Ison

Mighty Matthew taking on the world, one dumbbell at a time

MATTHEW Barnes gives a coy smile as he learns he has bench-pressed a personal best in his latest training session.

It is another notable achievement for the brave Rockhampton teenager who, in his 15 years, has had to rise to countless physical and mental challenges.

Matthew was born with Pfeiffer Syndrome, a rare genetic disorder characterised by the premature fusion of certain bones of the skull, which affects the shape of the head and face.

He spent just three weeks in Rockhampton after his birth in September 1998, before he was rushed to Brisbane for urgent medical treatment. Matthew was in danger of suffocating because his airways had closed over and the bones in his skull were threatening to crush his brain.

His first surgery was an eight-hour procedure in which his skull was removed and restructured to allow his brain space to develop.

"They couldn't give us any guarantees," says mum Kathryn Austin, remembering the ordeal. "It was definitely the scariest part of our 15-year journey, not knowing what the outcome would be. When he came out of theatre for the ICU they had to prepare me for what I would see. My little boy, so badly bruised, unable to breathe for himself, his face swollen beyond recognition."

Matthew Barnes and his mother Kathryn Austin, packing for another trip to Brisbane for medical appointments about pfeiffer syndrome. Photo Sharyn O'Neill / The Morning Bulletin
Matthew Barnes and his mother Kathryn Austin, packing for another trip to Brisbane for medical appointments about pfeiffer syndrome. Photo Sharyn O'Neill / The Morning Bulletin Sharyn O'Neill ROK200214smatt3

Matthew woke to the reality that surgery would become a regular part of his young life, as specialists worked to reshape his little face.

"I realised he was different when he was born," Kathryn said. "I kept hearing that he was abnormal but to me he was perfect."

The young mother watched on helplessly as surgeons effectively moulded the look of her baby boy.

"Playing with nature" was how one specialist described it. Matthew spent the first two years of his life in hospital.

"I would have lost count of the surgical procedures," Kathryn said.

"In the first year, it was endless. It felt like every week he was wheeled off to the operating theatre. I was left wondering how much more his little body could handle."

At age three, focus turned to Matthew's mid-face. He required a complete facial reconstruction - from his eyes to his jaw line.

Matthew Barnes, as a baby. He has pfeiffer syndrome. Photo Contributed
Matthew Barnes, as a baby. He has pfeiffer syndrome. Photo Contributed Contributed

Rods were inserted into his face and had to be tightened each night with a metal key to help shift his face forward.

Kathryn still has the key. As she holds it to her chest, it is obvious it still has the power to unlock some incredibly painful memories.

"He would scream. It was terrible," she says, the anguish etched on her face and clear in her voice, as she recalls the harrowing nightly routine of tightening the rods.

"There were times when I just couldn't turn the key."

Together, she and Matthew endured the ordeal like so many others they faced along the way.

As he grew, the interval between surgeries lengthened but Matthew's ailments are ever-present.

He still requires regular treatment and monitoring. He travels every six months to Brisbane to be reviewed by a team of specialists.

Matthew Barnes regularly goes to the gym to strenghthen his airways and muscles after being born with a medical problem. Photo: Chris Ison / The Morning Bulletin
Matthew Barnes regularly goes to the gym to strenghthen his airways and muscles after being born with a medical problem. Photo: Chris Ison / The Morning Bulletin Chris Ison

He has a speech impediment, wears a hearing aid and needs a continuous positive airway pressure machine to sleep at night.

He is working to increase his muscle strength and lung capacity with regular gym sessions.

The initial problems with his airways meant he never really developed a natural breathing technique.

And as if his journey hasn't been gruelling enough, Matthew has had to fight for acceptance.

He has been on the receiving end of some cruel taunts and is the subject of what Kathryn calls "the hurtful whispers".

But just as he has come to accept his physical appearance, Matthew is also realising he can't change other people's attitudes.

"He is learning to accept people not accepting him," Kathryn says.

Matthew is in Year 11. He is doing well at school and now has a part-time job at a cafe.

He describes himself as a "really shy person" but Kathryn says he is becoming more sociable.

Just as his physical strength is increasing on the back of his carefully planned exercise routine slowly, too, is his self-confidence.

"I feel I am getting stronger every week," he says, cooling down from his weights session.

"I've got so many symptoms but I feel like a normal person.

"I just have to do things a bit differently."

And he offers some sage advice for other people, who are facing their own challenges.

"Do your best. Try hard to overcome them," he says.



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