A getaway to ease life with Tourette's

02:00, Jun 13 2014
Caleb Belt
LIKE-MINDED: Caleb Belt, pictured with his dog Pepper, is looking forward to attending Camp Twitch - the first for children with Tourette Syndrome in New Zealand.

For Caleb Belt, hanging out with kids just like him is an exciting thought.

The 11-year-old, who has Tourette syndrome, will meet other children with the disorder for the first time when he attends the inaugural Camp Twitch in October.

The camp in Hanmer Springs will bring together Kiwis with Tourette's for four days.

Tourette syndrome is a paediatric neurological disorder that affects 1 in 1000 children, and an estimated 800 New Zealand kids have it. It is characterised by physical and vocal tics.

Caleb, from Feilding, can go weeks without having what his mother, Rachael Hooper, calls a "tic-ing" session. But when it does happen it is an exhausting experience.

Uncontrollable urges to kick his legs or flick his head during his sleep leave him tired and he often misses school the next day.


Although the tics were not a daily occurrence, Caleb said he felt a sensation like his brain being squeezed all the time.

Breathing and tensing exercises, along with medication during the bad sessions, helped to manage the disorder.

Caleb was diagnosed only last year and his mother said he had taken it all in his stride.

"He's a really cruisy kid. Even when he has bad tic-ing sessions if other people are staring it doesn't even bother him. We're really lucky he has such a laid-back personality."

Caleb said he was looking forward to meeting other people and making friends who understood how he felt.

Rachael, who will also be attending the camp, said she was looking forward to talking with other parents and learning how they manage.

Camp organiser Robyn Twemlow, executive director of the Tourette's Association of New Zealand, said: "We are hoping that the experience of finally meeting someone else with TS will reassure the children that there is nothing wrong with them."

Adventure activities, such as quad-biking and horse-riding, and a welcoming environment would help to restore the children's confidence without fear of being judged or stared at.

"We are hoping the children will forge friendships but more importantly be able to take ownership of their TS and no longer be ashamed," Twemlow said.

Manawatu Standard