Camp Twitch ‘a revelation’
When Robyn Twemlow’s daughter was diagnosed with Tourette syndrome in 2013, she found the lack of information about the condition so overwhelming she set up an organisation to support families on the same journey.
Twemlow’s daughter, Analise, was given her diagnosis as a 9-year-old. It was a shock to the entire family.
‘‘There was absolutely nothing out there about Tourette’s. No support groups, and as far as we were aware we knew noone else who had it.’’
Through social media, the family found another child with the condition and the two families met. ‘‘It was a lifesaver,’’ Twemlow says.
That ‘‘overwhelming relief’’ of hearing another mother’s story about a child with Tourette’s prompted her to set up the Tourette’s Association of New Zealand in 2013.
Following the meeting with that mother, Twemlow, a former journalist, contacted her local newspaper about her quest to find other families living with someone diagnosed with Tourette’s.
The response was overwhelming, she says.
The common thread with all the stories she heard was that everyone felt alone due to the challenges of the condition. They also felt like they were the only ones in the country living with it.
‘‘That’s when the idea to have Camp Twitch 2014 originated,’’ she says.
The camp, held at Hanmer Springs, was attended by 97 people.
In the same year, Twemlow was nominated by a parent for the Woman of the Year competition, and was one of five finalists in the community category.
Camp Twitch has been held three times, with the fourth set for October 1 to 5, at Ngaruawahia in Waikato.
‘‘Nowadays the camp has a mixture of people, from those who have just had a diagnosis to people who have come back every year.’’
She says the experience is often a ‘‘revelation’’ for families as they finally get to meet others who are experiencing the same challenges and learning curves of living with the condition.
While Tourette’s can be a shock for the sufferer, family members are also put into a new and frightening situation, she says.
‘‘It’s painful for them, too, as they can get hurt or their house can be destroyed if the person with Tourette’s gets physical.’’
She says she admires Ryleigh Hawkins, who has a ‘‘positive attitude’’.
Eventually she hopes overseas specialists will be able to be funded to visit New Zealand to train medical professionals on Tourette’s.
The Tourette’s Association of New Zealand has more than 140 members.