Charlie's Cystic Fibrosis condition inspires parent to help others

This regime, and taking up to 20 tablets daily, is part and parcel of living with Cystic Fibrosis for the Goulburn youngster.

His parents, Nicole and Luke, count themselves lucky that Charlie is relatively well and leads an active sporting life.

Cystic Fibrosis, or CF, affects one in 25 babies in Australia. It is a life-limiting genetic condition that, through a defective gene, causes mucus to build up in the lungs, digestive tract and other parts of the body. If left untreated, infections can develop.

Thanks to research and medication, life expectancy has extended beyond 38 years of age. However there is no cure.

"To describe CF in one word, it's exhausting for carers and sufferers," Nicole said.

Charlie was diagnosed with CF at 10 weeks of age, five weeks after a newborn screening test. Both parents must be carriers of the defective gene for their child to have the condition. Nicole said neither she nor husband Luke had any idea they were carriers.

"It was a shock and a massive learning curve. It was very daunting," she said of Charlie's diagnosis.

Nicole and Luke sought help from charity, CF Goulburn and District. It has enabled them to share experiences with other parents and access financial support for medications and sporting fees. As Nicole explains, leading an active life is vital for CF sufferers. Charlie plays soccer and loves riding his bike.

The network spurred her to join the committee two years ago as secretary. Like president/treasurer, Sylvana Aliffi, she is gearing up for for the charity's annual fundraiser, the 65 Roses charity dinner on Saturday, May 25.

Ms Aliffi said the charity knew of 12 people in Goulburn and district living with CF. Unless people come to them, the committee doesn't know if there are more.

"That's why we are very much about raising money for research and creating awareness to let people know we are there for support. It is vital," Ms Aliffi said.

Nicole said the knowledge that others were enduring similar experience had made a difference.

"We definitely have very bad and challenging days but we're very lucky we've kept Charlie well. Some children are in and out of hospital all year round," she said.

Her son had one hospital stay with an infection. Before the PEP device became available, he had daily physiotherapy on his chest to loosen mucus.

More recently, he has taken a new medication, Trikafta, which helps break down sticky mucus in his system. Recipients must have the Delta F508 gene mutation to access this.

"We're very grateful for it because it helps his lung function," Nicole said.

But every day is a balancing act. CF sufferers can't come in contact with each other for fear of cross infection. Nicole said this was "very daunting" when Charlie started school because she didn't know if other children had the condition. This was complicated by the fact some carriers weren't aware they had CF.

Fortunately, the couple's daughter, Ruby, now four, was born without CF. This was confirmed in a pregnancy test.

As she spoke, her children rode their bikes around the Victoria Park rose garden where benches have been dedicated to locals who died from CF. They include Sheridan Wood, Teah Calvert and Jake Apps.

Ms Aliffi said the Goulburn charity was formed in 1971. Sheridan's parents, Marilyn and Peter Mowle, Trish Groves, Edna Gallagher and many others worked tirelessly to raise money for CF sufferers.

Ms Aliffi became involved in 2016 after her grandson, Alex, was diagnosed with the condition.

"He's 13 now and is doing well but at the start, you do feel overwhelmed," she said.

The volunteer committee fundraises with barbecues, raffles and the annual 65 Roses dinner at the Goulburn Workers Club. Last year the dinner raised $45,000, including donations. A portion of funds goes to the Cure4CF Foundation in Adelaide to undertake research, while other money supports families with costs.

It's all crucial help in Nicole's book, who shares her advice to parents in the same situation.

"Take each day as it comes and find the best support network you can. CF Goulburn and District is here to support you," she said.