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.
RADIO INTERVIEWS:
Click the links below to listen-
Perth 6PR
Melbourne 3AW
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.
ReplyDeleteI'm so glad you can receive your meds! Way to go!