Russell Matheson (Macarthur, Liberal Party) Share this | Link to this | Hansard source

They say that living with cystic fibrosis is like breathing through a straw 24 hours a day. I have tried it for 10 minutes, and it is not easy. That is one of the reasons why I will attend the Macarthur annual swimathon for cystic fibrosis in my electorate this weekend.

Cystic fibrosis is the most common life-threatening recessive genetic condition affecting Australian children and young adults today. There are 3,000 people in Australia living with the condition, which clogs internal organs, including the lungs and the pancreas, with thick, sticky mucus. This seriously affects breathing and congestion. People with CF require daily intensive chest physiotherapy to help break up the mucus in their lungs so that they can breathe. They also take up to 40 enzyme tablets each day to help with digestion, just to survive.

Sadly, one in every 2,500 babies is born with CF. There are 1 million genetic carriers of CF in Australia. Unfortunately there is no cure, and many children who have the condition do not reach adulthood. In my electorate tonight a launch party will be held at Camden Valley Inn, and on Saturday the swimathon for cystic fibrosis will be held at the Wollondilly Community Leisure Centre. Over the past four years Macarthur has raised more than $140,000 for Cystic Fibrosis New South Wales, a great achievement by everyone involved.

In recent weeks I have felt very proud to see my community come together again to donate auction items and sponsorship to raise funds for this important cause. The event is run entirely by local people who have formed a committee led by the local Fairfax community newspapers for Camden, Narellan, Wollondilly and Macarthur advertisers. I would particularly like to mention the platinum and gold sponsors of this year's event: Hennings Jewellers, Peter Jermyn, DA Global, Plus Fitness, Camden Valley Inn, Byrons Chartered Accountants, Xstrata Coal, the Advertiser newspapers , Macarthur BEC, Illawarra Coal, FDC Construction, the TRN Group, Lifehouse Church Camden, Wollondilly Community Leisure Centre, Sharon's Photography, Macarthur Castles, Tahmoor Lions Club and Framing Beautiful. Without these sponsors the event would not be as successful as it is.

On Saturday I will take part in the swimathon as a member of Team Lozza. This team swims to support Lauren Rowe from Raby who lives with CF. Doctors gave Lauren 12 months to live when she was 19 years old unless she received a double lung transplant. Mr Deputy Speaker Murphy, I am sure you would agree that being told you are going to die is not something any teenager should have to hear. But Lauren never gave up hope. Her story is one of great courage and determination.

Before her transplant Lauren was confined to the lounge, attached to an oxygen tank and suffering terribly with lung bleeds. She dreamt of a brighter future where she would be able to take in a deep breath, go for a walk or simply spend time with her friends and family. Considering her circumstances, staying so positive would not have been easy, but Lauren showed great courage in the face of adversity and she never gave up hope. On 31 March 2010 Lauren received the news that she had been waiting for—a match had been found . She received her life-saving surgery. After many painful and difficult complications with her new lungs Lauren pulled through ready for her new life. I am very pleased to say that two years later Lauren is now living her life to the fullest. She is making the most out of every day, a promise she made whilst waiting for her transplant.

Sadly, Lauren's story is not one of a kind. In fact, she is one of 80 people in Macarthur and 3,000 people in Australia living with this life-threatening condition. I would like to take this opportunity to mention some of the courageous kids from my electorate who fight this battle every day: Julia Free; Corey Harvey; Tonia Dempsey; Jaylee Booshand; Lauren Rowe; Alden and Euan Keogh; Jessica Clements; Nicholas McNeill; Mitch Riley; Sue Briscoe; and Mitchell, Ashleigh and Jordan Bradney. Their courage, despite the terrible hand they have been dealt, is truly inspiring, especially in such young children. While most kids their age wished for iPads and iPods this Christmas, these guys make the same wish every year: that someone will find a cure for cystic fibrosis.

This is why the Macarthur community continues to come together to help raise money and support some of our bravest young residents. Today, I would like to congratulate everyone who has helped organise this fantastic event and all those who are taking part. I would also like to thank those who have sponsored me for my swim on Saturday. Luckily no-one sponsored me per lap, but some have donated on the proviso that I wear the Team Lozza uniform, which includes fluro pink tights. I think this will cost them a lot more money!

I feel very proud to be part of a community of people who care so much about each other that they come together to organise such a positive event each year. Cystic fibrosis can be a very isolating condition, with sufferers not allowed to spend time with each other due to the dangers of cross-infection. That is why it is important for those people living with CF in my electorate to have the entire community standing behind them, a community that shares the same wish: that someday soon CF will stand for one thing—'cure found'.