Buvette Masthead

Dash and the Speedo Shuffle

Carly Dewey

Our son was born naturally, on his due date.

He was made with all the love we could muster, on our wedding night. Apart from the morning sickness that followed me around Europe and joint/rib pain that plagued me as we grew, we had a pretty dreamy pregnancy. I’m sitting here with dogs at my feet nursing my little boy, something I was so nervous about doing but had no need to be. My supply is good enough to make my baby milk drunk after every feed. These feeds are full of love and little satisfied sighs and milk spilled everywhere and usually catch-ups of Reno Rumble or House Rules.

Our son has ten really long fingers, ten perfect little toes, the cutest baby ears that still have little hairs on them and fluffy hair just like his daddy’s. He sometimes dreams really loudly and more often than not will fall asleep while nursing. Our son barely stirs when his naughty dogs bark at birds while he is sleeping, despite having perfect hearing. He adores the car and going for walks and being passed around between all the people who so desperately love him.


On the Friday night, two weeks after he was born, my husband Nick answered a call from the paediatrician. We were half way through watching an NBA playoff game with a friend and Nick was busy making half time snacks in the kitchen. Eventually he got off the phone, came into the living room and when he answered my question of ‘who was it?’, it felt like he had literally punched me in the stomach.

Nick relayed what our paediatrician had told him, that our son may have cystic fibrosis (CF) and we needed to get to the hospital first thing in the morning. His words were so casual but enormously heavy. We spent Friday night crying, me uncontrollably. It was hard to believe, it was hard to look at my son and it was the hardest seeing my husband upset.

Dewy family

I cried all the way to the hospital the next morning as well. I admitted to Nick that I didn’t really want to be the parent. I wanted my parents to be there, to take charge and tell us everything was fine, that it was just a misunderstanding. Once I’d said it though, it sunk in that this was it. This was real deal parenthood. The previous two weeks had been bliss finding our feet with a baby, but it was time to face our first challenge as a family.

We didn’t know anything about CF; we just knew it wasn’t something we wanted for our son.

In the weeks post diagnosis, we figured out that CF impacts the lungs, airways and digestive system. There currently is no cure. Someone with CF has an average life expectancy of 38 and must undergo constant medical treatment and regular hospitalisation.

We soon found out how to track down his hard-to-come-by medicine and understand how to give it to him. We also found out who his CF medical team were, what they did and why they were poking our baby. We also realised that there was a CF community waiting to greet us and help us on our way.

We met the team at Cystic Fibrosis ACT within a month of Dash’s diagnosis. Cystic Fibrosis ACT provides us with everyday support both emotionally and practically. They give us the vitamins our Dash can’t live without. They help us pay for activities to keep him active and his lungs clear. They help us buy medical equipment, put us in touch with other CF families and give us all the sneaky tips to get through hospital and treatments.

Almost 12 months on, we’re much more optimistic about our lives, but there are still a few things that kick us square in the guts every damn time we think about them. One of those things is babies.

BABIES. I want them all. Or at least four of them! BUT now that we know we each carry a copy of this genetic mutation, we know that every time we go to have a baby naturally, there is a one in four chance of that baby having CF.

Dash - treatment

For obvious reasons, we would like to avoid having another sick child. We don’t want another baby to have to endure what Dash will have to. We don’t want Dash and his sibling sharing bugs constantly. We selfishly don’t want to witness another one of our children seriously sick.

We decided to go through Pre-implantation Genetic Diagnosis IVF. It’s expensive, it’s riddled with uncertainty and it’s proven to be the most frustrating, devastating, soul crushing process I’ve ever known. Yet we’ve decided to go ahead and do it anyway.

We are lucky though. We have one incredibly kind Doctor. We have each other. We most definitely have crossed fingers and toes that we can make this shit happen sooner rather than later.

Today, motherhood looks like a tornado. Or maybe that’s just my house! And although Dash has CF, our son is just like any other baby. Some days this is all too overwhelming and my heart aches for him, for his Dad and me. Other days I feel like a normal mum with a baby that just needs some extra special care.

As a mum, I feel like I have an obligation to speak up about cystic fibrosis.

Nick and I are determined to raise awareness and funds for Cystic Fibrosis ACT, who support us and many other families like ours in Canberra.

Registrations open for the Cystic Fibrosis ACT’s 6500 Santa Speedo Shuffle Thursday 5 May, and we hope to raise over $100,000 for families just like mine.

DashTheBrave_Santa Speedo Shuffle

We’ve also started a business which donates 50 per cent of our profits to Cystic Fibrosis ACT, we blog about our everyday life and we are all hands in when it comes to the 6500 Santa Speedo Shuffle.

To register, check the Cystic Fibrosis ACT website: www.cysticfibrosis.org.au

For updates about the Santa Speedo Shuffle, life with Dash, information about cystic fibrosis, and to get your hands on some Dash the Brave Sixty Five Roses gear, visit www.dashthebrave.com

See you in your speedos on Sunday 31 July!

All images courtesy of www.dashthebrave.com

  • disqus_NPYgpNWCyF

    Thank you for sharing your journey thus far with Dash. With parents like the two of you he will overcome any obstacles and grow to be a credit to both of you. I love that you are getting out there and educating and raising funds for CF. I wish you the best in your journey with Dash and growing your family. X

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