Emmah Evans, 28, Adelaide, SA
Growing up I knew I was different. Instead of running around at school, I was often in hospital.
My parents, Joy, 53, and Arnie, 64, adopted me when I was just a baby. Born with the chronic lung condition cystic fibrosis (CF), my birth parents were told I’d likely die at a young age. Unable to cope, they put me up for adoption at three weeks old.
Just before Christmas 1987, I was an early gift for Arnie and Joy. They’d always wanted to help a child with special needs and finding me felt like fate.
Dad knew just what it was like to live with a disability. At the age of nine, he broke his back. But during his treatment he developed such a severe infection they had to remove his left leg and hip and he was left a paraplegic.
Complications also meant he lost both of his kidneys.
But Dad never let his disability stop him from living a full life. He did normal things like drive me to school and cook the dinner. He even competed in the 1988 Seoul Paralympics, winning silver in weightlifting.
‘I must be Arnold Schwarzenegger’s long lost cousin,’ he joked.
Having an inspirational dad meant I didn’t dwell on my own problems for long. After adopting me, my parents had two biological children, Amy, 26 and Glyn, 23. I adored them and they showered me with love. But most of my childhood was spent in the hospital. My CF meant I often had trouble breathing and would easily get chest infections.
I also struggled to gain weight because excess mucus makes it difficult to absorb nutrients. Each night while I was asleep, a special tube would pump high calorie foods into my body.
Growing up I knew my life expectancy was short. I remember hearing that I’d be lucky to live to 37. Dreams of travelling the world or getting married seemed unachievable to me. And becoming a mum was completely out of the question. How could I have a baby when I was going to die so young?
Instead I focused on having fun while I could. At 15, I was named Girlfriend Magazine’s Girlfriend of the Year which opened the door to modelling competitions and I even wrote a book. The excitement and glamour was a distraction from how sick I was.
But every few months I’d end up back in hospital. While there, I made friends with other CF kids. It was amazing to meet others who knew how I felt and didn’t think I was a freak. Sadly, over the years, many of them passed away. It made me realise how close to death I was. It could easily be me next, I thought. But we’d nearly lost Dad so many times and he always came back fighting. I can beat the odds, too! I realised.
When I was 19 I started dating a great guy called Nick, then 18. He went to my school so knew about my illness. Nick’s a laid-back Aussie bloke, so he simply didn’t see my CF as a big deal. I had lots of body issues but he was determined to make me feel more confident.
‘You’re gorgeous!’ he’d say.
But it was hard to ignore the constant shots and the seemingly endless tablets I need to take to stay healthy. Each day I spent hours doing physio to clear my lungs or I risked infection. Still, Nick stayed by my side.
As time passed, we inevitably started thinking about our future. Could we ever start a family?
Men with CF are infertile and women mostly struggle to conceive. When I started researching online, I was hit with a barrage of negativity. Don’t do it! typed one person. Why would you have kids if you might not live? said another. But in my heart, I wanted to be a mum. I didn’t want my condition to stand in my way.
Don't do it! typed one person.
Nick and I decided we wanted to take the leap. The doctors said there was no reason we couldn’t try. Miraculously three weeks later I found out I was expecting! After a healthy pregnancy, I had Ayvah.
She brought so much joy into my life. Looking at Ayvah made me so grateful for my own family’s support amid the hospital visits and heartache. Despite my obstacles, I fell pregnant again. Our little boy, Logan, arrived 11 months ago and our family is now complete.
I can’t be as active as other mums which can be hard. Now Ayvah is three years old, she’s becoming aware that Mummy is sick and needs needles to feel better. When I cough, she’ll get me water or just spend time cuddling with me on the sofa.
A new drug has proven to greatly improve lung function of people with CF, but at $300,000 a year it’s unaffordable for me. So I’m campaigning for it to be made available on the PBS. I want to live to see my kids grow up and maybe even become a grandma someday. I truly hope I can access the drug before it’s too late.
Last October Nick and I wed in a beautiful ceremony. Marrying the man who’s been my rock for nine years was the happiest day of my life.
These days I normally end up back in hospital every six months for a few weeks at a time. Without Nick and my family for support, I’m not sure how I’d cope.
Keen to share my story, I started a Facebook page, ‘CF Mummy’ to inspire other women with the condition to realise they can do anything they set their mind to.
I don’t know what the future holds, but I’m determined to beat the odds – just like Dad.
Originally published in issue 27 of that's life! magazine - July 7, 2016.