Life is a race against the clock for Robert Chaiban, who suffers from a rare disease that has trapped his adult mind in a boy's body.

Chaiban, 17, has Barth Syndrome. He was the 17th person in the world diagnosed with the disease that afflicts and eventually kills boys, Australia’s Moreland Leader reported on Wednesday.

Growth and motor skills are reduced, the immune system is weakened and muscles around the heart slowly suffocate it.

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Last year Chaiban, of Chintin, Australia, survived five heart attacks.

A conference this July in Florida with other Barth Syndrome sufferers will offer hope for Chaiban and his family, who run a car-repair business in Coburg, Australia.

"It will be really good to talk to someone that understands what it's like," he said.

"I want to learn more about it and have a deeper understanding; some days I'm positive and there are others that I don't want to talk to anyone."

His mother, Marie Ottone, said she already lost one son, Jacob, to the same disease in 2002.

"Everyone in the family was rocked when Jacob died, especially Robert," she said.

Chaiban left school and works in the family shop with his parents.

He said he would like to work somewhere else, but employers don't take him seriously because he looks so young.

Click here to read the full story from the Moreland Leader and to see a picture of Robert.