WHEN Mount Eliza mother Rachel Miller received the diagnosis six years ago that her then four-year-old son had Tourette Syndrome, she set about finding out as much as she could. Now, with her son, a 10-year-old at primary school, she is on a mission to ensure that all young people and adults with TS, and their families, are also aware of the support and help there is within the community.
“It made such a difference to our family when we found out there was help and other families to talk to,” she said.
Miller is currently raising money to help families attend camps run by the Tourette Syndrome Association of Australia and is holding a fundraising silent auction and raffle mid-year on the Mornington Peninsula to help more families attend. She is also seeking items and donations from local businesses.
Miller said the support her family received through TSAA was invaluable, and she was happy to be able to spread the word. “The Tourette Syndrome Association of Australia is volunteer-run charity that has been going since 1989, and all our funds go to directly supporting those with TS,” she said.
“There is a national camps program in six states, where families can meet other families, swap information and find out more about supporting their loved one. “These are a highlight of the TS calendar year and many families and adults with TS coming together. It is often the first time many meet someone else with TS and it is a vital part of our organisation, which is currently underfunded.”
TSAA also runs a national online forum to help people break down the isolation many people with TS feel, educational and resource materials, support groups in six states and school in-service programs. Miller said the community understanding of TS was often based on what people saw depicted in films, but that was usually exaggerated or incorrect.
“It is a neurological disorder that results in verbal and physical tics, but not everyone will have the same tics, and not everyone will swear like they do in the movies,” she said. “It’s important to raise awareness in the community and also get the word out to people with TS that there is support and people to talk to.”
The TSAA spokeswoman Sophie Derriman said the association also supported people with other tic disorders. Anyone needing information or businesses that can help by donating raffle items or a hall, should contact the TSAA at info@tourette.org.au
First published in the Mornington News – 26th March 2024
