Australian Story: Oct 21

Monday night’s Australian Story features Cracking the Code, a story on extraordinary advances being made in genetic science, introduced by Dr Norman Swan, from Radio National’s Health Report.

This is a story of the discovery of an incredibly rare disease led by a man who had no medical training whatsoever – just a son with a shocking illness nobody in the world could name.

It’s the Lorenzo’s Oil of genetic and modern day medicine.

The plan to find the cause of this debilitating ailment was envisioned and designed by Stephen Damiani, Risk Management Specialist, entrepreneur and father of Massimo who, at the age of one, began to suffer horribly as his nervous system collapsed.

“There were alarms flashing everywhere, the faces of everyone in recovery at 2am were just grim and you could just read something terrible had gone wrong that night.” says Stephen Damiani.

The father’s ‘outside the box’ method – forged with corporate discipline and unyielding belief – was aided, abetted and eventually executed by a young, driven, ‘humble indie rock-star’ genetic scientist (Dr Ryan Taft) who also believed in this different way to look at medicine.

“Ryan took an approach which was very pragmatic saying, ‘Jeez this hasn’t been done before but then he said I’d like to give this a go and we knew we’d found that one in a million person that we needed.” says Stephen Damiani.

Together, they’ve not only discovered Massimo’s disease; they’ve pioneered a way to find any rare or mysterious illness.

What once may have taken a lifetime to discover now can happen in six months – even less. (Ryan’s latest discovery took three and a half weeks).

It’s turning the medical world upside down.

Stephen and Ryan’s work, combined with other extraordinary advances being made in genetic science, means our children will soon be treated before they’re even sick.

Monday October 21, 8pm on ABC1