Nine-year-old Harrison Williams uses a wheelchair and has a rare genetic disorder called Duchenne muscular dystrophy.
It is a muscle-wasting condition his mother Linda described as "the most severe of its kind".
"You lose the ability to walk at a young age, eventually every muscle in your body, your heart muscle wastes and those diagnosed with Duchenne have a limited life span," she said.
Ms Williams said the condition, predominantly found in boys, meant Harrison needed a wide variety of assistance from the National Disability Insurance Agency (NDIA), everything from support workers, equipment, occupational therapists to phycologists and hydrotherapy.
Up until the week before Christmas last year, he received all of this vital help.
But during a recent visit to palliative care facility Hummingbird House in Brisbane his family was left stunned to discover his funding had been slashed by 40 per cent, without any warning at all.
"I got a call to say some of his therapy wasn't able to be paid, because the NDIA had apparently issued a new plan for Harry," Ms Williams said.
"Traditionally they call you and then they email you, but this had been three months since we'd had the plan meeting and it was absolute news to us.
"They slashed what was dangerous levels to Harry to be quite blunt, they really took a hammer to it without any reason."
Ms Williams said she had since tried to draw some kind of explanation from the NDIA to no avail, and faced paying more than $1,000 for a new report.
"It's a circus to fix it. You have to spend more on that poorly funded plan for new reports," she said.
"We started back in December, and having to deal with someone who's experiencing palliative care whose condition is progressing and the onus is on us to provide the majority of care.
The Williams family faced extra pressure, dealing with the NDIS slashing, while also learning their family home was being put up for sale.
Ms Williams said they have had to allow people to tour their rental home while their son was bedridden and unable to move due to his degenerative condition.
"We're not in a position to own our own home so we have to rely on rentals," Ms Williams said.
"Right in the middle of all of this our landlord decided to sell the house. Everyone knows what the rental market is like at the moment.
"It's a really uncomfortable position to be in for viewings."
Ms Williams said her son was confined to bed.
"So the people having to view our house have to work around our son, we see them looking at him but not taking much in about him because they're there for a business transaction. It's a bit hard to go through.
"The look on some potential buyers' faces is not pleasant.
"Everything's just turned on its head at the moment."
NDIA says plan being reviewed
In a statement, the NDIA said it "recognises the challenging circumstance the Williams family are facing, and the priority is ensuring Harry has the disability-related supports he needs".
It said the agency had been in regular contact with the family to process a new plan after the family's request for a review.
"During the planning process, the NDIA works with participants and their families to understand their current individual circumstances, and the NDIA reviews all information provided at the time to make decisions on reasonable and necessary supports," a spokesperson said.
"If a participant thinks a decision the NDIA has made is wrong, they can request a review of a decision. The NDIA fully respects a participant's right to review."Where further evidence is provided, the NDIA can consider if further changes to the plan are required."
When asked about the cut, Shadow Minister for the NDIS Bill Shorten said it was out of touch and "robotic".
"Australian citizens should not have to get lawyers and take the government to court to get a modest package of support for their nine-year-old son," he said.
