Friday, May 31, 2013

WOW, What a week!

I certainly didn’t think 12 months ago almost to this day when I started taking Kalydeco that I would have the opportunity to tell the Prime Minister of Australia how this drug has changed my life.

On Thursday 30th May my Grandfather Ken and I along with Cystic Fibrosis Australia were very privileged to meet and talk with Australian Prime Minister Julia Gillard and Health Minister Tanya Plibersek to explain the impact that Cystic Fibrosis has on 3000 adults and children in Australia and to advocate for the subsidization of the life saving drug, Kalydeco.

I also presented a 5-minute speech to around 30 members of parliament at the Cystic Fibrosis Morning Tea held at Parliament House, Canberra.

This is my speech:

Imagine you just woke up with the flu. It’s not the worst flu you’ve ever had but it’s enough to knock the edge off you. You feel congested, tight in the lungs, your nose is blocked and you feel really lethargic. Imagine you’ve also got a stomachache, you feel bloated, irritated and uncomfortable. You lay in bed feeling sorry for your self, hoping that it will pass in a few days and you can go back to doing all the things you want to do. Now imagine someone told you that your virus and stomachache were permanent, that it was never going way. Imagine that they told you that it actually was just the beginning and it would most likely only get worse. Imagine this is now your ‘normal’ state of being from here on in.

It’s not unbearable and you’re not in a huge amount of pain but you’re now burden by your body no matter what you do everyday. You wake up every morning struggling to breathe because you have so much mucus in your body and your tired because you haven’t slept as your coughing kept you up overnight. You’re not hungry but you know you have to eat because you’re already underweight from the stress on your body. You force your self to exercise in hope that it might just move the mucus from your lungs and make you feel better.

Slowly your flu and stomachache gets a little worse each month. You realize that you can’t keep up with your friend’s busy social schedule and work is becoming overwhelming. Imagine your flu and stomachache now requires IV antibiotics on a regular basis because the oral medications aren’t strong enough to fight your infections. You’re falling behind at work because your constantly disrupted by the hospital admissions and you begin to loose touch with some friends who can’t cope with your ill health.

Imagine one day someone told you they could give you 2 little blue pills a day and all your suffering would almost instantly stop. Imagine they told you that you could go back to waking up in the morning with energy, that you could stop vomiting from coughing and you could simply breathe easily. The pills would relieve you from your stomachache and your lungs would no longer feel congested. The medication would make you feel like a new person and you could finally say you felt healthy again. Your family and friends could stop worrying about your declining health and you could finally start living life the way you were meant to.

This was my life.

I was born with Cystic Fibrosis, Australia’s most common recessive life threatening genetic disease that affects a number of organs especially the lungs and digestive system. While there are currently around 3000 adults and children living with this disease in Australia, I have a very rare gene called, G551D that affects around 4% of CF suffers worldwide. This rare gene allows me to be eligible for a life saving drug called Kalydeco. At the beginning of 2012 my family and I became aware that I was eligible for this drug however it was not available in Australia. My health had begun to rapidly decline and news of this drug bought a newfound hope for my family and I. Due to the fact this drug was not available in Australia my grandfather generously decided to buy 3 months of the drug at a cost of $65,000. Almost 12 months to this day and almost $300,000 later I have been extremely fortunate to be given the gift of health due to this life changing drug and the generosity of my grandfather.

I can honestly say without a single hesitation that this drug has changed my life. I’m not angry or resentful I was born with Cystic Fibrosis because without it I wouldn’t be the person I am today. I’ve always had big plans and big dreams and I have always been determined to never let Cystic Fibrosis stand in the way of anything I set out to do in life. Whilst I was determined and I never lost sight of my dreams the reality was that Cystic Fibrosis was pushing them further and further away. At age 22 I’d worry on a daily basis about whether I’d actually get to do all the things I wanted to do before I died. Id worry that I wouldn’t get to live life to my full potential. Since starting on Kalydeco these worries have lifted and I feel like I’ve been given a second chance at life. I now run my own commercial photography business and travel all around Australia photographing advertising campaigns. I have also completed my degree in both Arts and Education and lecture photography two times a week at The Australian Academy of Design. Kalydeco is more than just a drug that allows me to ‘breathe easily’, it gives me the opportunity to live my life to it’s full potential, it gives me back my happiness and it gives me back my future.

I would just like to say a massive thank you to Cystic Fibrosis Australia, particularly CEO of CFA David Jack,to my family and friends and the Australian media, particularly journalist Sue Dunlevy at News Limited for the enormous amount of support.

Page 8, The Daily Telegraph, Sydney, 30th May 2013

Page 3, The Herald Sun, Melbourne, 30th May 2013

Front Page, The Courier Mail, Brisbane, 30th May 2013

 Pg. 14 The Advertiser, Adelaide, 30th May 2013

The Shepparton News, 31st May 2013

The Herald Sun, Friday 31st May

David Jack (CEO of Cystic Fibrosis Australia), Ken (grandfather) and me, meeting with with Australian Prime Minister Julia Gillard and Minister of Health Tanya Plibersek at Parliament House, Canberra.  


Click the links below to listen-

Perth 6PR

Melbourne 3AW

1 comment:

  1. Great work! Although I do not have CF I do know the struggle we have with breathing. I have a restrictive lung disease along with pulmonary hypertension and now required oxygen 24/7 and assistant with a bipap at night.

    I'm so glad you can receive your meds! Way to go!