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House of Assembly - Fifty-Fourth Parliament, First Session (54-1)
2018-07-31 Daily Xml
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Cystic Fibrosis

Ms COOK (Hurtle Vale) (15:53): Cystic fibrosis is the most common life-limiting genetically inherited condition affecting South Australians today, with one in 25 South Australians carrying the CF gene and 350 people living with CF.

Forty people with CF are also living post lung transplant and a small number have also had a liver transplant. The daily impact of CF is a struggle to breathe and absorb nutrients from food. In 1970, when Cystic Fibrosis SA was established, children with CF were not expected to live to adulthood. Today, a child diagnosed with CF may look forward to a much longer life, but there is no cure for CF and every day remains a struggle.

The impact on families begins with the devastating diagnosis of CF, usually within weeks of birth, and can include financial pressures and emotional stress. To maintain weight and to breathe, a person with CF must undertake up to two or three hours of physiotherapy every day and have nebulised medication twice a day to help thin the mucus in their lungs and lift it from the surface so they can cough it up.

They also have to swallow up to 60 tablets per day to replace nutrients and enzymes. This is not a simple disease to manage. When they have a lung infection, they must have IV antibiotics for up to two weeks at a time. This often means a two-week stay in hospital. Some children with CF will miss up to two years of school by the time they turn 18. Missing school clearly impacts their ability to continue to tertiary study and obtain employment.

Cystic Fibrosis SA supports South Australians living with CF with programs to alleviate financial and emotional stress, advocacy, information, education and funding clinical improvement programs locally as well as research into treatments and a cure through the Australian Cystic Fibrosis Research Trust. The Cure4CF Foundation has also been supporting research for a cure here in South Australia for over 15 years. Both organisations are well represented by ambassadors who are living with CF.

Emmah Evans from Cure4CF Foundation writes the CF Mummy blog, which you can read on her Facebook page—just search 'CF mummy'. Emmah is raising two young children with her husband. She lives in my electorate of Hurtle Vale. Our kids have done swimming together. I have watched the impact of CF on her life, and she is a great friend and an inspiration to me.

With the shadow minister for health, Chris Picton, last night I attended the launch of DonateLife Week, hosted by DonateLife SA and CFSA. Kyle Collis spoke about the impact of CF on his life. Within hours of his birth, he required life-saving surgery and his battle to stay well ever since with only 60 per cent lung capacity is incredible. With cystic fibrosis, he has recently competed in a 24-hour obstacle course endurance race. He is a true warrior.

Last night, we also heard the stories of six other people living with CF post lung transplant. They were powerful and moving messages about the importance of organ donation. One of these people is a dear friend to many of us here and in the other place, the wife of ex-MLC Gerry Kandelaars, Glenys. She received a life-saving lung transplant in May last year after a diagnosis of cystic fibrosis late in life. Her husband, Gerry, resigned from parliament in order to care for her as they prepared for her transplant and long recovery. Glenys has had a remarkable outcome from surgery and looks forward to many more years of life and joy with her family and young grandchildren.

A person with CF is most likely to die from respiratory failure, while others will experience liver or kidney disease as a complication of CF and the medications. For many, an organ transplant will become part of their treatment, but with 1,600 Australians waiting for an organ transplant, it is not a reality for everybody. However, one donor can potentially save the lives of 10 people. Making the decision to donate our son Sam's organs 10 years ago really gives our family some hope and comfort, and we know that he lives on in someone else.

I urge every South Australian to register and have a conversation about donating their organs. Go to the DonateLife SA registry to do so. I pay tribute to the many who succumbed to CF way too young. I remember fondly Daniel Cox, who passed away in 2010 at the age of 20. He was a cricketing mate of my son and a friend and inspiration to many. A transplant was not enough for Daniel, but he will be remembered always, as will so many in the CF community. Their friends and family honour them daily with their bravery.

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