DESPITE looking like an average toddler, the life of Bella O'Brien and her family is anything but.
Bella, aged one, lives with cystic fibrosis, an incurable genetic disease.
After five years of trying, Chrisi and Jason O'Brien fell pregnant with "their gift", Bella, through IVF. But seven weeks after she arrived their world was shattered.
Bella was diagnosed with cystic fibrosis, which primarily affects the lungs and digestive system because of a malfunction in the exocrine system, responsible for producing saliva, sweat, tears and mucus.
There is no known cure and people living with the disease must undergo constant medical treatments and physiotherapy.
The average life expectancy of someone suffering from the disease is 38.
Her mother Chrisi said they faced a long road ahead.
"We do daily physio, she's on pancreatic medication, vitamins, lots of trips to Brisbane to start with and things will change as she gets older and grows up," Chrisi said.
During May, local artist and family friend Jimmy Wags held a raffle to raise money for medical research into the disease.
The raffle of his artwork raised more than $800 and while it's now finished, people are still encouraged to donate online direct to Cystic Fibrosis Australia.
"We're not raising money specifically for Bella as we can make do.
"But people can donate to the research fund if they wish, we would rather the money go toward finding a cure for this disease."
She said there is hope for improvement in the condition but the medication Kalydeco is hugely expensive.
"It costs about $300,000 a year and it's not available on any public funding scheme."
To donate to Cystic Fibrosis Australia visit cysticfibrosis.org.au.
To support the fight to have the Federal Government put Kalydeco on the Pharmaceutical Benefits Scheme, head to change.org and sign the petition at: change.org/petitions/the-australian-government-add- kalydeco-to-the-pbs.
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