Her little boy Aidan is dying, a rare gastrointestinal condition slowly eating away at his organs.

Between regular hospital visits, Mrs Jachim’s daily routine is both physically and emotionally exhausting.

Aidan, 8, requires six meals and 1500ml of fluid a day, each assiduously recorded in a special food diary.

His condition, called hollow visceral myopathy, has him locked in a state of almost constant discomfort, oscillating between abdominal pain and severe bloating.

Each meal takes up to 10 days to pass through his stomach and he needs five catheters a day to drain his bladder.

But despite it all, Mrs Jachim has shown a remarkably positive attitude.

“People say to me ‘how do you cope?’ and I just say, ‘it’s life’,” Mrs Jachim said.

“It’s what we’ve been dealt; it’s what we do.”

On top of the emotional toll, the mum of four and her husband Shane have had to weather the financial storm that comes with regular doctor appointments and the purchase of specialist equipment.

But this week, the Jachims were gifted some rare good news, offered a $1715 grant from The Steve Waugh Foundation.

The money will go towards a roof pod and racks for the family car, allowing the Jachims to store Aidan’s many extra items when they go on trips.

The family is also being supported by the Aidan Jachim Special Circle, a local charity organisation aimed at easing the burden on Belinda and Shane.

Aidan’s life expectancy is between 15 and 25 years but Ms Jachim said he too remained positive.

“He knows all about his condition and talks about it as if it’s just his life,” she said.

“And while it gets him down sometimes, he’s just a regular kid.”