By CASEY NEILL
NARRE Warren South teen Ace Bryans faces a bigger battle than most to complete his schoolwork.
Writing an essay leaves the 14-year-old exhausted, but a new device could help.
‘Acie’ has glutaric acidemia type 1 (GA1), which means his body can’t properly break down some amino acids. His mum Raylene Bryans said this could cause brain damage.
“When he was diagnosed with that he wasn’t given a very good chance. They said he’d be lucky to live to three years,” she said.
“We make sure he eats and drinks constantly so his body doesn’t have a chance to make that acid. If he’s sick, he’s straight into hospital.”
Ace also has neurological movement disorder dystonia.
“His muscles constantly spasm. That causes pain,” Ms Bryans said.
“The medication makes him dopey and he refuses to take that.
“He wants to be able to communicate and not feel so lost.”
She’s hoping a fundraiser this weekend will bring in enough money for a new device to make communicating easier for him.
“He currently wears a bindi on his forehead,” she said.
“Because of the muscle spasms he has it takes him a long time and quite a lot of energy to write something he wants to say.
“He’s got to move his head to use it.”
They have an eye-gaze system in their sights.
“It actually follows his pupils, and he has no spasming, no muscle alteration at all in his eyes,” Ms Bryans said.
“It’s probably the best part of his body.
“He’s very expressive in his eyes. His eyes are quick and very responsive.”
Ace has trialled the system.
“It’s very fast. He just looks at a particular word or the keyboard and then it will click on what he wants,” Ms Bryans said.
“It’s an instant system for him.
“He won’t be exhausted after typing an essay or something at school.”
But the eye-gaze system will cost more than $10,000 – something the financially strapped family can’t afford.
“I’ve bought him up on my own. I’ve got six children,” Ms Bryans said.
“Ace being Ace, he never asks for anything.
“We had $30,000 worth of equipment stolen in Cairns and never replaced. That was about seven years ago.
“They stole his wheelchair and all his equipment that was in my car, and they trashed it.
“They toyed with his wheelchair and pushed it off a pier. They threw his device out.”
Ms Bryans said the Cairns police held a golf day and brought him the device that he uses today.
“He’s never had a wheelchair fitted for him since then. He’s got one that I’ve made up for him,” she said.
So Ace’s best friend and fellow Narre Warren South P-12 College student Brooke spoke with her dad, a Piston Steel Shakedown member.
The group will combine with SouvHut and Supercheap Auto this Saturday to hold a Family Car Show.
It’ll be held on the corner of Fiveways Boulevard and Cheltenham Road, Keysborough, from 11am to 5pm.
There’ll be special appearances from Batman, Robin, Bat Girl, Posion Ivy and The Joker.
Sonyta Trahar and The Volkaniks will provide live music and there’ll be a jumping castle, face painter, auctions, prizes and giveaways.
