Thomas Roberts has Friedreich's ataxia causing his nervous system to gradually disintegrate. He is reliant upon a wheelchair for mobility, limiting the number of houses suitable for him to live in.

"I can't have a house with stairs... even a one inch lip on a door frame is really difficult for me to get around," Mr Roberts said.

He said it was "very annoying" most people assumed he could live in any house, or was just being overly fussy.

"People think one or two stairs is okay," he said. "They say 'oh you should be able to do that.'"

"One or two stairs isn't accessible. They don't realise how much of a pain that is."

Mr Roberts currently lives with his wife Teja and their two kids.

Ms Roberts said her husband had endured pain and isolation and difficulty just to have a roof over his head.

"He just wants to live a life like everyone else his age wants to live," she said.

The family are forced to make-do with unsuitable houses because it is "damn near impossible" to find something wheelchair friendly, according to Ms Roberts.

Of the few houses the couple find available for rent in the area, most are unsuitable.

Bathrooms are not set up to maneuver a wheelchair in; showers generally have a raised lip to enter; any door frame too narrow, or with a raised step is impassable.

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The couple cannot make the necessary adjustments to improve livability because they are renting.

They moved to Batemans Bay on the NSW South Coast more than 10 years ago, and have since lived in four different residencies, including spending five years in a two-storey house. Mr Roberts was essentially confined to his bedroom, because his wheelchair struggled to fit through the bedroom door, yet alone access the second storey.

They've been on the public housing waitlist for 10 years, and received no offer of accommodation.

"We were told we would have to wait for someone to die for a house to become available," Ms Roberts said.

The young family do not know what they would do if they were forced to move from their current rental.

"I can't just go to a friends house and stay on their couch," Mr Roberts said.

"I can't go homeless because my disability equipment isn't waterproof."

"You can't live out of your car when you live in a wheelchair," Ms Roberts said.

"I hope we can have a house where he can have complete freedom, like everyone else does."