LIVE GAME Rd 27 NRL discussion

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Looking at how much the disease has progressed, even the 500m walk would have taken a lot out of Jai. You can see he's trying to tough it out and walk up right without a frame.

I hope all this awareness helps raise some funds for research into neuro disorders. The best cure could be early detection and the more we can research the early signs, the more likely we are of developing something to slow down the progress at least.
They say once your voice goes, it’s all down hill. Poor guy.
 
They say once your voice goes, it’s all down hill. Poor guy.
It's only downhill once diagnosed unfortunately.

The rate of progression is so scary

Weirdly enough, I smile when I see Jai, not cry. I've worked a little in paediatric neuro and do some work in NDIS. Not many people get the "ending" that Jai is getting. Others with neurodegenerative conditions probably live this through Jai.
 
It's only downhill once diagnosed unfortunately.

The rate of progression is so scary

Weirdly enough, I smile when I see Jai, not cry. I've worked a little in paediatric neuro and do some work in NDIS. Not many people get the "ending" that Jai is getting. Others with neurodegenerative conditions probably live this through Jai.
Both times he walked out he was clinging to his arm. My guess is he doesn’t have much strength in it feels and feels a bit insecure being front and centre with all eyes on him. Felt like there was an element of self soothing and a way to calm himself.
 
Both times he walked out he was clinging to his arm. My guess is he doesn’t have much strength in it feels and feels a bit insecure being front and centre with all eyes on him. Felt like there was an element of self soothing and a way to calm himself.
poor bubby
 

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