‘It literally breaks you’: fight for denied NDIS support dominates 22-year-old’s final months

Toby Tyne would look out at the glistening water on the other side of the window.

For about 12 months the 22-year-old had been unable to get out of bed. The only way he'd left the family home in Kempsey, New South Wales, was in an ambulance.

"He dreamed of being able to just literally float in the pool," says his mother, Angela Tyne. "But I don't think he ever thought it would happen. He thought, 'They're not going to approve it.'"

Believed to be the first person in the world diagnosed with spondylo-ocular syndrome, which causes cataracts and severe bone fragility, Toby was stuck in a years-long battle with the agency running the national disability insurance scheme.

His brother, Hunter, who has the same disability, says Toby's bones were so brittle he once fractured a finger scratching his back. Four years earlier the Tynes had first requested the agency pay for a pool hoist to allow Toby and Hunter to use the family pool for hydrotherapy.

But Toby never made it into the water.

"For someone that was bed-bound, getting into that pool would increase his mobility," Hunter says. "And it would have given him access to outside the house and let him spend more time with family."