Parents Jase and Sarah are in the fight of their lives

Jace, can you tell us a bit about Sonny's journey?

Yeah, so at the start of this year, January, Sonny started having seizures.

Before those seizures, he'd had speech delays, developmental delays.

We were sort of like, it's probably autism or something.

I've got that running in my family a fair bit.

Then the seizures started getting worse and worse and worse.

And the doctors just put it down to epilepsy.

And then we noticed his motor decline.

He started struggling to get himself up off the ground.

He's very shaky.

He would stumble when he walks and runs.

The doctors ordered a MRI that came back with a shrunken cerebellum, which is like the little bit in the back of your brain, controls motor function, speech, all that sort of stuff.

And some white matter changes, which is not good either.

Then the neurologist team at the children's hospital brought us in one day and said, hey, look, prepare yourselves for the worst.

This is a degenerative condition and we don't think there's going to be a cure for it.

So they sent away some genetic testing in May that came back as a thing called Batten's disease, which is basically a terminal degenerative brain condition where the neurons in your brain are destroyed by rubbish that your brain, your body can't get rid of.

Since then, we've just been slowly watching Sonny decline.

Um, and life expectancy is generally around six to 10 years without treatment.

There is fortunately with his particular type of Batten's disease, there is a treatment which can slow progression, but it doesn't cure it.

He will very unlikely make it to being a teenager.