A PLASTIC dispenser adorning the front entrance of Kieran and Rebecca Van Jole's family home indicates their dedication to protecting its precious inhabitants.

A push on the dispenser's lever produces hand sanitiser, a process Mrs Van Jole prefers all guests undertake.

Her vigilance is born out of repeated hospital stays with a daughter who has a heartbreakingly short life expectancy.

Lyla entered the Meridan Plains couple's lives nearly two years ago as a younger sister to daughters Alyssa, 10, and Raven, 4.

Early tests detected she had hearing loss, something with which her parents were dealing when she took ill about four months after being born.

Her liver was enlarged, she was lethargic and doctors told Mrs Van Jole her daughter's head was "shaped differently".

Within a week they determined Lyla had a peroxisomal disorder, a rare metabolic pathway condition that inhibited her ability to process fats and sugars, which in turn affected her cells and organs.

It is terminal, with severe cases limiting lives to less than a year.

Children with mild cases rarely live past 10.

"It was the worst day of our lives," Mrs Van Jole said.

"They sit you in a room and tell you what they think is wrong with your child."

The Van Joles have since undertaken to enjoy every moment with their daughter.

"We want her to be happy and don't want her to know there is anything wrong."

There have been health setbacks along the way, the most traumatic being a stint in a Brisbane intensive care unit in April after an unknown virus made Lyla critically ill.

She went into respiratory arrest and then developed pneumonia.

Those experiences drive Mrs Van Jole's vigilance in protecting her daughter from germs.

"It's crazy but you have got to think like that because something small to someone could be the end of her life."

Lyla's eyes are also failing her.

She can't see objects that are multicoloured, instead needing them to be solid colours with bold outlines.

However, her inquisitive nature overrides her disabilities.

"She loves to play and bang on things and press buttons on music toys," Mrs Van Jole said.

"My next goal is to work with her to get her to walk."

Community support through fundraising events has helped the Van Joles with the cost of Lyla's many therapies and medical appointments.

Their love for each has been the foundation of their strength going forward.

Mrs Van Jole said past experiences meant her stress levels were particularly high any time she had to take her daughter to hospital.

Her eldest daughter knows about Lyla's condition but her four-year-old is yet to have it explained.

"Being able to talk to my husband and family about that is how we get through."

Lyla's illness has heightened Mrs Van Jole's appreciation of life.

"I just want other people to appreciate their life.

"You've got to look at the great things and the great things in your kids."