from page 14 “When he’s out in the water it seems to calm the Tourette syndrome or it doesn’t seem to affect him out there.
“It gives him some peace instead of spending every second of every day trying to control the tics.”
Matt recently qualified for the State Surf Lifesaving Championships and was named club champion.
Matt’s sister Madison (16), who attends Carine Senior High School with Matt, said people often made fun of Tourette Syndrome.
“All over Facebook there are videos, people laugh at it; it’s not really fair,” she said.
“People ask me why he does it but it actually pains him to hold in the tics. It’s not really him; he just can’t control some of the movements and some of the words that he says.”
Australian Tourette Syndrome Association president Robyn Latimer said a sense of isolation was common among young people with TS.
“There is a huge amount of misunderstanding, largely due to whenever it is portrayed in movies there is always a sensationalised version about the swearing and social taboo words, to the extent where many people think that is what TS is,” she said.
“Only 10 per cent or less ever have that tic, so it’s quite a distortion of the reality and that makes it very difficult for families when children are diagnosed, because that is the image they have.”
Mrs Toms said diagnosis of TS was a struggle and more support was needed for families and children living with the syndrome.
“It took us a long time. The problem with getting diagnosis in Perth is there is a very short supply of specialists and it’s really hard to get in to see a specialist with long waiting lists for kids,” she said.
Friend and neighbour Marie Moore noticed the family’s struggle to deal with the misunderstood condition and organised ‘Matts Trek 4 TS’, a fundraiser to raise awareness of the syndrome on May 15 at Trigg Beach.
National Tourette Syndrome Awareness Week runs from May 8-14. Visit www.mycause.com. au/events/mattstrek4ts.