Pride of NZ: Mother created lifeline for Tourette's sufferers

Robyn Twemlow with her 11-year-old daughter, Analise, who has Tourette's syndrome. Photo / Martin Hunter

Robyn Twemlow
Community Spirit

When Robyn Twemlow's daughter Analise was diagnosed with Tourette's syndrome at the age of 9, she was in "utter shock".

She had never considered her beloved child's quirky behaviour was due to anything more than her bubbly personality, or perhaps a symptom of attention deficit hyperactivity disorder (ADHD).

The concerned Christchurch mother quickly turned to Google.

"I had the major misconception that Tourette's was an adult disorder where people came out with swearwords," Ms Twemlow said.

She had never met anyone, of any age, with the disorder and wanted to know more.

But she was stunned to discover that none of New Zealand's official health sites had any information on Tourette's syndrome.

There were no dedicated websites or support groups.

Flabbergasted, she posted on Facebook and was soon put in contact with David and Caroline Ashby from Napier. They had previously run a telephone support service for parents as well as a website about Tourette's.

The contact was a "godsend" for Ms Twemlow.

"It meant that I wasn't the only person in New Zealand with a child with Tourette's."

Ms Twemlow set about getting an article published in her local paper asking other families who had loved ones with Tourette's to contact her.

She was surprised by the high level of feedback, and found there was an unmet need for support.

So she organised a special camp at Hanmer Springs in North Canterbury. Almost 100 people attended from across New Zealand, including more than 30 who had the condition.

"It was outrageously successful and to this day people are still going on about it."

From there, she decided to form the Tourette's Association of New Zealand.

In its second year, it has more than 150 members, from age 5 to people in their 60s. The charity, which has been self-funded so far, has filled the gap for many families who live with Tourette's and has embarked on an ambitious education campaign.

It has led to Ms Twemlow, 44, whose daughter Analise is now 11, being nominated for the Pride of New Zealand Awards in the Community Spirit section.

Her nominator wrote: "I only discovered TANZ last year and the change it has made to my life is amazing. Finally I have support!"

Entries for the annual Pride of New Zealand Awards, honouring extraordinary Kiwis making a difference in their communities, are still open.

The awards build on the success of the inaugural awards last year, in which more than 700 individuals were nominated for their extraordinary personal sacrifices to help, save and care for others and the environment.

The Pride of New Zealand Awards are proudly brought to you by The New Zealand Herald, The Hits and TSB Bank.
Nominations for the 2015 awards have now closed.
To see more stories of our wonderful nominees click here.
For more information on the awards go to the official website.