Guest blog by Emmah Evans
My name is Emmah and I have Cystic Fibrosis. The most common life threatening, hereditary illness effecting primarily the lungs and digestive system.
I was given up for adoption at only a few weeks old as my biological parents were told I wouldn’t live through my childhood – I was adopted by my beautiful parents; my Dad is a paraplegic, with 1 hip, 1 leg, no kidneys and he himself is an inspiration (an ex-Para Olympian; he represented Australia in the Seoul games in 1988- competing in weightlifting)
At 16 I found my biological parents who believed I had passed away, I remember my older brother also telling me he remembers his baby sister dying.
I spent most of my childhood in and out of hospital fighting constant infections. I attended my first funeral at the age of 6 and unfortunately this became an “annual” event.
In 2005, I won national girls magazine, Girlfriend, “Girlfriend of The Year” award, donating my prize money to Cystic Fibrosis Australia. I also became the youth ambassador of Australia for Cystic Fibrosis. 2005 was the beginning of my new life – a new perspective and the year I really decided that I wanted to make a difference in the world.
At the age of 16 Random House Australia published my autobiography – one of my greatest achievements. At 24, I had been on many adventures from modelling to appearing on television to travelling around the world. I remember it was at this time I wanted to become a Mum.
As I began my research about Cystic Fibrosis and pregnancy, it was not encouraged and very un-heard of. Women didn’t live to an age to conceive let alone be a mother. I learnt men with CF are infertile and for women it could be very difficult to naturally conceive so fertility help would probably be a must. I was blessed. I am now a proud mother of two beautiful children, Ayvah who is 3 and Logan who is 1.
Having a chronic illness and motherhood is definitely a challenge. I felt there was not much information out there I started CF Mummy. I show what it’s like living with CF and having two little ones. Oh and a husband.
I’m a dreamer and a go-getter and never take no for an answer. I don’t like that CF has a life expectancy of 37, I’m 28 years old, an expiry date is not acceptable.
As an ambassador for The Cure4CF Foundation – it gives me hope that a cure could potentially be at arms length. I need to maintain my health for the next few years, raise as much awareness, educate people and continue my journey as a motivational speaker so that when the time comes, I will be ready to participate in these trials. (If 1.5 million is raised over the next 5 years it will bring the research team to the human clinical trial phase!)
How awesome to know there is hope that I may not need to have a transplant. The majority of my friends who have had to have transplants are not here today, so it doesn’t seem all that appealing to me.
My upcoming High Tea; Fearless is about proving that I am fearless of this invisible disability, I want to encourage others also that disability should not be something to be afraid of and that we are FEARLESS.
With a goal to raise $5000 if it is reached – I will be facing my ultimate fear and diving with the sharks in Port Lincoln in November.
I am excited to have Channel 10’s Rebecca Morse hosting the event, which will be held in The Grand Ballroom at The InterContinental on Sunday 30th October, with 2012 The Voice Finalist, Sarah Lloyde providing entertainment and a silent auction with some awesome items up for grabs, the high tea is going to be a wonderful afternoon.