When he was eight years old, Marc Milne’s battle with Tourette syndrome was so difficult he became suicidal.
His mother, Belinda, described Marc retreating to the family’s backyard trampoline so that the involuntary movements, known as tics — which took over his whole body — would not harm him.
“He put himself out onto the trampoline so that he could do these tics which were rolling and jumping,” Mrs Milne said.
“That was the place where he could least harm himself.
“And at some point Marc basically said, ‘I’m sick of doing this. I can’t do this anymore. I want to kill myself’.”
Marc’s tics could be verbal, or they could result in the urge to do repeat movements, like rolling, jumping, or even hugging.
His brother Ronan also suffers from Tourette syndrome; his symptoms are quite different, and can see him falling into fits of rage that are impossible to control.
‘They hug me if I need hugs’
Belinda and Scott Milne said their sons’ new school was a supportive environment. (ABC News: Ben Harris)
Tourette syndrome is a neurological disorder that affects roughly 45,000 children across Australia, but the Milnes believe that there is a distinct lack of understanding of the disorder.
They had to remove both Marc, now 11, and Ronan, 10, from a former school because of what they saw as a lack of support.
“The teacher told Marc that he was possessed with the devil and had demons in his head and that was the cause of his Tourette’s,” his father Scott Milne said.
The family have since moved schools, and things have improved.
Marc said he enjoyed being at school, and had friends who tried to understand what he was going through.
“They hug me if I need hugs, if it’s a hug tic,” he said.
“They help me with my Tourette’s by distracting me with stuff and making me laugh.”
While for the moment Marc’s condition is largely expressed by hugs and uncontrollable blinking and twitching, that could change in the future.
“Sometimes I feel stuff in the back of my neck, sometimes I feel stuff in my eyes or in my head,” Marc said.
“Like right now, I feel something in the back of my neck.”
About Tourette syndrome:
- Tourette syndrome affects about 45,000 children in Australia
- Symptoms can include fits of rage, violent jumping, facial tics and even hugging
- Research suggests the disorder is often misunderstood
- Only 15 per cent of parents have explained it to their children
Source: Tourette Syndrome Association of Australia
In some cases, Tourette tics can be life-threatening because of their unpredictability and their extreme nature.
“Marc had to have safety equipment — he’d smash his own head into concrete,” Mr Milne said.
“He would fall over without putting his hands out. He would smash his fists into walls.
“He’d also jump into the air and throw his knees into the ground. It was horrible.”
Awareness crucial to sufferers’ well-being
St Clare of Assisi principal Matt Egan-Richards helped the boys’ parents to set up a scavenger hunt and raise awareness of Tourette syndrome. (ABC News: Ben Harris)
Mr Milne said they were “on the edge and barely coping” as a result of their sons’ suffering.
He said he could not hold down regular employment because he needed to be available at any time to help if one of his children needed him.
The family also travelled often, visiting Sydney to see their specialist doctor.
To add to this, new research by the Tourette Syndrome Association of Australia (TSAA) suggests the condition is not well known, often mischaracterised and stigmatised.
It reported 23 per cent of people have never heard of Tourette syndrome and only 15 per cent of parents have explained it to their children.
The Milne family began trying to raise awareness about Tourette syndrome after they realised this.
They, along with St Clare of Assisi Primary School in Conder, where the boys attend, teamed up with TSAA to run a scavenger hunt to educate students and staff.
Students were guided by an app, called TAC’TICS, on which they engaged in challenges by acting out different types of tics.
Principal Matt Egan-Richards said educating the children through practical means helped to build acceptance and empathy.
“The important part is being open and honest,” he said.
“Not shuffling Marc away when sometimes we might hear some language that is a lot less than ideal, but the kids are used to it.
“We’ve been able to talk to the kids ever since Marc’s been here about Tourette’s and what it means.”
The Milnes said the support they had received from the school had been “amazing” and they were a stronger family because of it.
“We’re just lucky that they’re fantastic boys — they’re highly intelligent and really creative,” Mr Milne said.
“So when they’re not ticking, the amazing thing is that they get straight back into school.”