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25.01.2022 I am jealous of Steve Smith. Jealous of all the attention he’s been given. The cheating scandal engulfing Australian cricket has been labelled a national disgra...ce. But in my reality, this scandal pails into insignificance. Right now, I sit with my 12-year-old daughter who has Cystic Fibrosis. A beautiful, loving and smart girl whose life could be extended by decades thanks to a medical breakthrough called Orkambi. Orkambi is a medicine which costs about $250,000 per year yet our Federal decision makers have said she’s not worth it. Nor are the 1500 other young Australians waiting to access it. Many other countries have already granted access - recognising the need to improve, extend and save these innocent lives. Orkambi reduces hospitalisations by 61% and adds two decades to life expectancy if taken early enough. My daughter is literally dying before my eyes but somehow this national disgrace isn’t front page. This is why I am jealous of Steve Smith. There are no press conferences or media scrums when Evie cries and contemplates her future. Her future isn’t the focus of conversation in every lounge-room and around every barbecue in Australia. But she should be and so should all the other beautiful children like her. Our Health Minister Greg Hunt MP and Vertex Pharmaceuticals should have to sit down and face tough questions from reporters about their credibility and failures. Failures that have already caused and continue to cause loss of life. Failures that ARE, undeniably, a national disgrace. #fallingthroughthecracks #cysticfibrosis #orkambi Please share. EDIT- On the be 17th of Sep 2018 Evie started Orkambi. It is now available to those with double f508del Cystic Fibrosis over the age of 6 years old for a cost of about $40 (max) a month. So much gratitude to everyone who commented, shared and supported. Together we have given Evie and others with double f508del CF an extra 20 years of better quality life. THANK YOU. I’ve had lots of questions about where to donate. This post isn’t about fund raising for Evie. This is about bringing awareness to this issue for Evie and 1500 others. However, if you really want to donate to support the campaign for all 1500 CF patients then consider Cystic Fibrosis Australia. They have been working hard to get Orkambi for all of us. their page can be found at https://www.cysticfibrosis.org. Cystic Fibrosis Queensland Cystic Fibrosis Australia Greg Hunt MP Vertex Pharmaceuticals
19.01.2022 The Classic Wrap!
19.01.2022 Great all season dress!
14.01.2022 Cold Shoulder Top can be worn 2 different ways!
