General

65 roses for Cystic Fibrosis

Cystic Fibrosis is a life-limiting disease that causes thick mucus to effect the lungs and digestive system.

Almost 400 West Australians are affected, and have a life expectancy of 31 years, compared to the average Australian who has 81 years.

Non-profit organisation Cystic Fibrosis Western Australia hopes to close this gap over the next four to five years.

Children with the disease sometimes have to take up to 40 tablets a day, enough medicine to fill a wheelie bin a year.

Cystic Fibrosis Western Australia CEO Nigel Barker said in preparation for 65 Roses day 150 volunteers are wrapping up 1600 roses to be sold.

“Our fundraising goal tomorrow is $100,000. The money raised will support the services and research towards treatments for CF,” Mr Barker said.

Perth mum Ashlie Shilton found out her son Beau was diagnosed with the disease when he was only 2 and a half weeks old.

“We were going through so many emotions all at once, I had never felt heartache like this before,” Ms Shilton said.

“The phone call from the hospital was unexpected. My husband and I were in disbelief.

“We were soon administering up to 20 lots of medication per day and 30 to 40 minutes of physio a day.

“Finding out our perfect baby boy had a life threatening disease as well as all the new information we had to learn was a lot to take in.”

Ms Shilton said, “As time goes on, it is getting easier to accept, especially with how far medicine is coming along, I have hope that Beau will live a long and happy life.”

Mr Barker said, “over the last three years three new drugs have been created which are the first to access the underlying cause of Cystic Fibrosis.

“There is also a fourth drug currently in the phase of clinical trials that will be on the market in the next five years to aid sufferers.”

65 Roses Day for Cystic Fibrosis

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