Tourette teenager

Western Suburbs Weekly - - Streetwatch -

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.

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