Aidan Jachim, 11, was born with Hollow Visceral Myopathy, a rare genetic condition that affects less than 2000 people worldwide.

Diagnosed at just six-months-old, the condition has caused a very slow digestive tract, frequent bowel obstruction, a distended stomach and limited kidney function.

Aidan spends much of his time in the Sydney Children's Hospital. 

He cannot eat more than 250 grams of food daily, and requires numerous feeding tubes because he can’t properly digest his food.

It’s an around-the-clock task for his parents Belinda and Shane Machim, who are also his sole carers.

It takes them 1.5 hours just to get him out of bed every morning – taking out IV lines, emptying his bladder and bowel, recording those results and preparing medication.

Despite all of this, Aidan’s National Disability Insurance Scheme (NDIS) plan was revoked on September 7 because his condition “is not recognised as a disability”.

“It’s heartbreaking,” Mrs Jachim said.

“Without that support, our only option for respite and a rest from being his carere is to travel to Sydney.

“It’s shifting away from all his family, all his friends, just so he can have a rest and we can have a rest.”

Family friend Lee Alkerman, The Butterfly Fulcrum chairman, has set up a gofundme page for Aidan and his family with the hope of raising $220,000 to cover the cost of nurses and other medical costs.

“Aidan fears if we can’t get that support, he’ll end up in hospital permanently,” Mrs Machim said.

To donate, visit www.gofundme.com/the-ndis-said-aidans-not-disabled