Zack, Mario and Cole have severe Tourette's... often misunderstood, Dateline follows them to a camp where they find they're not alone.
Tuesday, August 20, 2013 - 21:32

Zack, Mario and Cole are three friends who share a remarkable bond.

They're among the most severe cases of Tourette Syndrome in the United States, suffering a range of involuntary verbal and physical tics and sometimes violent outbursts.

The neurological condition is often deeply misunderstood by society, leading to feelings from sufferers that they don't fit in.

But Dateline's Aaron Lewis follows the boys to a place they can truly be themselves.

It's the annual Camp Twitch and Shout, a special summer gathering for children with Tourette Syndrome, between the ages of 7 and 17.

So why is this camp so special? And what does it mean to the young people who take part?

Follow their journey in a powerful story that is both heart breaking and heart warming.

WATCH - Click to see Aaron's report.

UPDATE - Dateline continued to follow Zack's story after this report... Fighting Chance in March 2014 revisited Zack when his condition had worsened and the family faced the prospect of drastic surgery. And in September 2014, Zack's Battle followed him through that surgery and then back to Camp Twitch and Shout.

TOURETTE'S FACTFILE - Find out more about the syndrome and how to get local advice and support from the Tourette Syndrome Association of Australia.


Tourette's Factfile

The Tourette Syndrome Association of Australia provides local information and support. Here are some of its facts about the condition"¦

- Tourette’s is a neurological disorder that usually starts between the ages of 2 and 21 and lasts throughout life. People with Tourette’s have a normal life span.

- It’s characterised by rapid, repetitive and involuntary muscle movements and vocalisations called 'tics’, which can vary from simple twitches and noises, to more severe actions such as hitting and biting or the involuntary utterance of obscene words.

- Typically tics increase as a result of tension or stress and decrease with relaxation or concentration on an absorbing task. The severity of symptoms can also vary generally over time.

- People with Tourette’s are more likely to also have other behavioural problems, such as Obsessive Compulsive Disorder (OCD) or Attention Deficit and Hyperactivity Disorder (ADHD).

- The cause has not been definitively established, but it seems to stem from the abnormal metabolism of a brain chemical called dopamine.

- Studies suggest that Tourette’s is usually, but not always, inherited. The severity can vary considerably between generations and the disorder may not be evident at all in some people.

- It’s named after 19th Century French neurologist Dr George Gilles de la Tourette, who was the first to specifically identify the syndrome.

- There is no cure, but medication can control some of the symptoms in some cases. There is currently no medication that can eliminate all symptoms.

- Some sufferers see a marked improvement in their condition in their late teens or early twenties.

Follow the links above for more information, plus the Camp Twitch and Shout site has more on the camp in Aaron’s story.