Mother's fight to save her daughter from cystic fibrosis
IN Australia, one in 2500 babies is born with cystic fibrosis and there is no cure.
Since 1986, all newborns have been subject to a heel prick test. This test is used to screen for a number of conditions, one of which is an indicator for cystic fibrosis.
When Faye Elder was told that her daughter Karli had cystic fibrosis as an infant, she wasn't exactly sure what it was and had only heard about the condition second-hand.
"I had only known of one young lady who had the condition out at Longreach where I grew up and she had died at the age of 23.
"I knew it was a heart breaking battle we couldn't win."
On average one in 25 people carry the cystic fibrosis gene. Most are unaware they are carriers.
Because carriers show no symptoms, they are unaware of their cystic fibrosis carrier status. Yet they have every chance of passing on the gene to the next generation and that generation to the next and so on.
"Unbeknown to my husband and I, our families both carried the gene for Cystic Fibrosi," Faye said.
"The news was devastating and the thought of having a sick child made us terribly sad, but you know what, there is so much that can be done these days to help keep Cystic Fibrosis patients healthy. As long as my husband and I were prepared to do the work Karli would have a good fighting chance."
Faye said people with cystic fibrosis developed an abnormal amount of excessively thick and sticky mucus within the lungs, airways and the digestive system. The mucus causes impairment of the digestive functions of the pancreas and traps bacteria in the lungs, resulting in recurrent infections that lead to irreversible damage.
Lung failure is the major cause of death for someone with cystic fibrosis.
"We have done and continue to do everything that I possibly can for Karli," she said. "We wake her up every morning before she would normally get up to do physio treatment and breathing exercises.
"She takes about 30 tablets a day and then in the afternoon we do the physio treatment again - it takes 40 minutes twice a day and is unrelenting.
"It's a really big deal for the family and everybody is affected by it but Karli, who is now nine years old, doesn't know any different - it's just her life."
Faye said despite the constant treatment and the bleak outlook for the future, Karli was inspiring and a true little battler.
"We bat off each other through the ups and downs and in the end you just have to make the best of it and don't look too far ahead into the future," she said.
"It's about enjoying what we've got and finding the positives despite knowing that no matter how hard we try eventually Karli will most likely succumb to the disease.
"However, right now it is about remaining positive for the family and for Karli's future."