NT man living with rare degenerative disease finds joy through AI music

ABC NEWS (Australia)

There may be global concerns over the influence and impact of Artificial Intelligence, but one Territorian embraces the technology wholeheartedly. Daniel Lalara has a degenerative disease which has left his paralysed and resorting to a cumbersome alphabet board to communicate. But he has found that turning to AI means he is able to better identify and convey complex thoughts and feelings.

Transcript

00:00Ten years ago, Daniel had his last conversation.

00:06He was always like the cheeky run amok one, the best at hide and seek.

00:10You know, the one running amok on my 16th birthday.

00:13Daniel has Mercado-Joseph disease, or MJD.

00:16It deteriorates nerve and muscle, and took his voice.

00:19Like most people diagnosed with the disorder, within 10 years of symptoms emerging,

00:24Daniel became dependent on others.

00:26His father had MJD before he passed.

00:30Obviously Daniel has it, and he's been living with it for quite a while.

00:35The Northern Territory has the highest rates of MJD in the world,

00:39with over 800 Indigenous Australians thought to be at risk.

00:43It's a hereditary disease, passed down from parent to child,

00:46with a 50-50 chance of children developing symptoms.

00:50MJD is also, you know, cruel in its way that Daniel's completely cognitive,

00:55and he just doesn't have the means to physically be able to speak to you.

00:59When a family member recently developed MJD, Daniel looked to new technology

01:03to help them navigate life with the disorder.

01:06You've always been a leader in your community like that.

01:09Yes, that's a big nod. I really agree.

01:13Daniel and his psychologist used AI to source information about MJD,

01:17and blend it with his own life experience to channel his thoughts into a heartfelt message.

01:22With the AI, we're sort of getting not just a word or a stick,

01:27we're getting meat on the bone, and it's developing into a strong muscle.

01:31The message they created was then used to reignite Daniel's old way of forming connections through music.

01:42And it was more than just jazzy saxophone to his family and friends.

01:46I'm a friend of Daniel's. We've been friends since we were teenagers,

01:49and I haven't heard his voice for 10 years.

01:52I think it's a really good example of, like, the good use of AI,

01:56because there's so much contention around it,

01:58and the fact that it can give a voice to the voiceless.

02:02Unable to speak, but heard once again.

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