DEAN KOZANIC/Fairfax NZ
TRUST STARTED: Amber Murdoch with her children, Rhys and Gwynedd, and Robyn Twemlow with daughter Analise have set up a charitable trust to help people with Tourette's syndrome.
A Christchurch mother has achieved her dream of setting up a charity to help people with Tourette's Syndrome.
After her 9-year-old daughter was diagnosed with Tourette's, Robyn Twemlow went on a mission to find others with the syndrome.
In July, The Press ran the story of how Twemlow's daughter Analise began developing "tics" - blinking constantly, clicking her mouth, making noises and moving things around so that they were "just right".
After six years of doctor's visits, Analise was diagnosed with Tourette's Syndrome.
In an effort to connect to others, Twemlow "desperately sought people with Tourette's" to set up her own charity.
"There was no information about Tourette's in New Zealand," she said.
"I was so confused and frustrated. There are no peer support groups for the kids [and] no support or educational groups for parents and caregivers or teachers."
In the three months since her story ran, Twemlow has achieved her dream. She has now set up a legal charitable trust, The Tourette's Association of New Zealand, along with fellow Christchurch mother Amber Murdoch.
The association aims to help and support Kiwi kids diagnosed with Tourette's and their family members, caregivers and friends.
"The dream has been achieved so far. It did feel great to reach that milestone."
Twemlow has also managed to get "the most amazing" ambassador on board for the charity - Chance Raspberry.
Raspberry has been the lead animator on The Simpsons for the last seven years and has Tourette's.
"He is animating his own sitcom at the moment for kids with special needs based on his own childhood experiences," Twemlow said.
"He is so supportive and keen to help in any way he can."
He had already been emailing a New Zealand teenager who was struggling to come to terms with his Tourette's.
The charity planned to bring Raspberry to New Zealand next year.
"Funding is really the big issue now," Twemlow said.
"There's a lot of charities out there and not much money to go around."
The charity have organised their first fundraiser next month - a 30-day challenge to get people to move their body for the month of November.
Twemlow said the event was playing on the fact that kids with Tourette's had to move.
"They can't help moving so we're challenging others to be active every day and get sponsored to do so."
The funds raised would help Twemlow organise her next big project - a camp for children with Tourette's and their families, called "The Big Twitch".
"The camp would be an opportunity to bring parents and children together so we can all share our experiences and advice," she said.
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