Alex Parker, 31, Melbourne, Vic shares her incredible story:
Gasping for breath, I made my way into the hospital.
At 21 years old, these visits were nothing new for me.
In fact, I’d spent my whole life in and out of hospitals needing treatment for cystic fibrosis, a chronic lung condition which I’d been born with.
My parents had kept me as healthy as possible, making sure I stuck to a strict exercise and physio regime so my body didn’t deteriorate.
But once I finished high school and moved out on my own to study at uni, I started to neglect my health.
My body soon sent me reminders: my weight had shrunk to 50kg and trips to the hospital became frequent.
A lung transplant wasn’t on the cards for me, since my lung capacity was still at 60 per cent, but I knew someone my age shouldn’t be sick.
On one hospital visit, a young doctor looked at me.
“Have you heard about the new trial drug for cystic fibrosis?” she asked.
She explained how the US had a drug called Kalydeco, which helped those with the same mutation of CF as me to maintain their health by preventing the body from causing the mucus build-ups that left me breathless.
There was just one problem: it was only available in the US.
Mum did research and discovered the tablets could be imported, but it would cost $300,000 for a year’s supply.
“Maybe your grandfather could help?” Dad suggested.
His dad, Ken, better known to us all as Gumpy, had had a successful career as a businessman and could probably afford to help.
“Of course I will,” he said when I rang and explained the situation.
We decided to buy three months’ worth to start with. I didn’t want to get my hopes up but within weeks I started feeling more energetic than ever.
In that three months,I put on 10kg and my lung function improved by 20 per cent.
One of my many stays in hospital. Image: Supplied
I could run without coughing and spluttering and finally get a good night’s sleep.
Gumpy quickly ordered more. “You can’t come off it now,” he insisted.
I was so grateful.
Around this time, I met a guy named Michael, who I knew through a friend. We hit it off and started dating.
“I’m not normally like this,” I told him on one of our dates. “My cystic fibrosis means I’m usually unwell. Are you okay with that?”
I expected a guy in his mid-20s to find the idea of a sick girlfriend too much to deal with, but Michael was nonplussed.
“It’s fine,” he reassured me. “I’m here for you.”
My first round of Kalydeco. Image: Supplied
Although my life had improved, I was aware that there was a limit to Gumpy’s funds and there were so many others who could benefit from the drug but couldn’t afford it.
So I teamed up with Cystic Fibrosis Australia and started going to Parliament House, talking to any politician who’d listen.
“This drug needs to be publicly available,” I told them. “Imagine living your life with a sickness and knowing there was a pill that could make you a normal person again. People with CF need this.”
Being a mum to Ruby is the most precious gift. Image: Supplied
One day, Gumpy accompanied me to Parliament when someone came over and told us that Julia Gillard, then Prime Minister, wanted to talk to us.
My heart leapt – this was the PM. I needed to convince her that the government simply had to help.
Julia sat and listened to me politely – it was clear from the questions she asked that she understood cystic fibrosis.
I hoped I’d managed to get the ball rolling, but for the next five years there was almost no action.
Then, I was accepted as part of a free trial for the drug in Australia, but that still meant others were missing out.
Michael, me and our daughter, Ruby. Image: Supplied
By the time I was 29, the government finally made the drug available in Australia.
“All those years of campaigning paid off!” I cried to Gumpy.
“I’m proud of you,” he said.
My whole family, and Michael, were stoked by what I’d helped to achieve.
But – honestly – I was just doing what anyone would have done to help people with cystic fibrosis.
Michael and I later got engaged and had a child, Ruby, now three.
Looking at my daughter made me feel truly blessed.
Me (centre) and Gumpy (far left) after a meeting with then Prime Minister Julia Gillard. Image: Supplied
There was a time when it might not have been possible for me to become a mother but by now life had shown me that miracles do happen.
My grandfather saved my life. Now, I’m determined to live to the fullest.
I work as a photographer and have travelled the world and shared many adventures with my fiancée and daughter, thanks to this medication.
I hope that by sharing my story, I might inspire others to never give up.
Cystic fibrosis has presented me with plenty of challenges, but it’s brought my grandfather and me even closer.
When COVID-19 struck, I couldn’t see Gumpy, so Ruby and I wrote him letters and sent craft we’d made together.
What he did for me was the ultimate act of love, and I will always be thankful.
Ken, aka Gumpy, tells Take 5:
I often wish I had nominated Alex for Junior Australian of the Year.
Her conscientiousness in everything she does makes me so proud.
When it came to helping her, I didn’t even think twice and I’d do it all again if I had to.
