Cystic fibrosis (CF) is the most prevalent genetic illness in Australia; it primarily affects the lungs and digestive system – there is no cure and sufferers have a 38-year life expectancy.
Five-year-old Chloe Edwards from Yamba was diagnosed with the condition when she was five weeks old.
Her parents, Kate and Anthony, are holding a fundraising event at the Yamba Shores Tavern Boardroom and Bar on Friday May 20 in aid of not-for-profit organisation Cystic Fibrosis Queensland.
Chloe, who is regularly treated in Brisbane, has been hospitalised twice as a result of the condition; CF Queensland is the only organisation in the state that “provides specialised support for people with the condition”.
“They do boredom-buster bags, give support back to families for their equipment, like the PEP [Positive Expiratory Pressure] mask and nebulisers, and any other equipment that they need,” says Kate.
Apart from having to spend several hours each day clearing her airways and exercising, Chloe lives a regular life for a child her age.
“We are pretty consistent with physio every day,” Kate says, “she does a PEP mask twice a day and a hypotonic saline nebuliser once a day (twice a day when she is sick); and she has antibiotics as soon as she gets a cough or a cold.
“Her pancreas still works; she’s among the 15 per cent, she’s pancreatic sufficient.”
People who suffer from pancreatic insufficiency are unable to properly absorb fats due to the decreased production of pancreatic enzymes and, as a result, are at risk of experiencing malnutrition and fat-soluble vitamin deficiencies.
While people with normal or near normal pancreatic function tend to have less severe lung disease and better nutritional status than their counterparts, pancreatic function varies with age and tends to worsen over time.
“Hopefully a healthy lifestyle will help Chloe in the long run, to live a longer life,” says Kate. “With a lot of research and things like that into the future, hopefully it’ll be lot longer than 38 years.”
She says that holding the fundraising event is way to give back to CF Queensland and to “help other people who need assistance”.
Cystic Fibrosis Queensland needs about $1million a year to provide services and support for sufferers, including: loaning of equipment, provision of oxygen therapy, emergency relief funding, conducting parent dinners to provide up-to-date information and an opportunity for parents to meet others in similar situations, provision of online training and education, accommodation services and research.
This is the third fundraiser the Edwards family has held, having raised $6,058 in 2014 and $5,002 in 2012.
Guest speaker at the event is Amanda Zivkovich, 42, who had a double lung transplant two years ago.
Tickets are $70 each for a two-course dinner, entertainment, auctions, raffles and much more – tables seat 10 people.
Please purchase tickets up until Sunday May 15 by calling Kate Edwards on 0429 424 336.
For more information about CF Queensland, go to: www.cysticfibrosis.org.au/qld