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A mother’s experience with cystic fibrosis

Sally-Anne Clark

You’ve met a guy.

You’re at that time in your life when you are sick of the dating scene, you’ve got a great job, a wardrobe full of wonderful clothes, amazing friends, but that special person is missing from your life.

Your ‘work husband’ decides he knows the perfect guy for you – his brother-in-law! You get his number and you send that text! A week later you have a 3pm coffee blind date – the perfect time – you can leave before dinner if things aren’t going to plan or that coffee can merge into dinner and a drink or two. Ours did exactly that – we were eventually kicked out of the pub at 2am. It was safe to say it went well and we got along like a house on fire.

Over the next six weeks we spent as much time as possible together, spending time with each other’s friends and family, and most importantly getting to know each other.

Seven weeks in you find out you’re pregnant – four weeks pregnant to be exact! There was never any question about keeping the baby. We both had great jobs, earned good incomes and while we may not be living in our own great Australian dream (our own home) we were certainly not going without anything.

At 12 weeks we announced our pregnancy to mixed responses – most people were happy and excited for us, but of course, there were those that were worried that we had just met, that we didn’t know each other, that we were rushing things, but we didn’t care.

My pregnancy was not without its ups and downs – there were ambulance trips, hospital stays, major surgery and fears for a very big baby – but there were no indications during the four scans I had throughout the duration of my pregnancy that anything was wrong with the baby – our baby girl that we found out we were having.

I went into labour on my due date, and after a rough 27 hours, Amelia Louise made her entrance into the world. She was perfect – ten fingers, ten toes, wispy blonde hair, and on the lighter side of average – 3.25 kilograms, certainly not the big baby my wonderful midwife was expecting.

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We spent seven days in hospital – not for Millie, but for me. When we took Millie home, we almost immediately knew something wasn’t quite right. Millie struggled with breastfeeding, she pooped a lot – a lot of green poop – she was losing weight, and she cried, she screamed, what felt like ALL the time!

Our midwife visited us each day and I hoped for a few grams weight gain, and would then try all of the new strategies that she would suggest to help Mill. It was Colic, it was wind, she was lactose intolerant, she had reflux… we heard it all offered up as a possibility in the first two weeks of her life.

Finally, after surviving on three-hour rotating shifts of sleep for four days, I insisted that more had to be done. We saw a neonatologist who checked Millie over and some tests were run. Later that afternoon, day 15, we were told Millie had high levels of sugars in her stools which was most likely an indication that she was lactose intolerant, so that night we tried a lactose-free formula and Mill slept for four hours in a row – we thought we had found our problem.

Little did we know that less than 24 hours later our lives as we knew them would be forever changed.

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At 16 days of age Mille was diagnosed with Cystic Fibrosis (CF), the most common life-shortening genetic illness in Australia. A quick Google search sparked fear and anger in me that I can still recall to this day.

We were admitted to hospital immediately and over the next six days we met what was to become our CF care team and most importantly we met with the Cystic Fibrosis Association of the ACT who would become a lifeline for us for information, support and guidance.

On the day Millie was diagnosed, Allan and I made the promise to each other and to Mill, that we would do whatever we could every day to help her in her fight against CF. We make her treatments a priority, doing things for her that benefit her health, and we do what we can for CF ACT who help our CF community every day with life-saving medications, health subsidies, financial support, and more.

Millie is well. She is thriving. She is a feisty toddler who loves to play, go for a swing, go wild at her weekly gymnastics class, hang out with her best friend Eloise, go for a milkshake, and is enjoying now going to daycare two days a week.

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But this is the reason why we will run in the Santa Speedo Shuffle 2017. To raise much-needed funds for the organisation that has helped us keep our little girl so well.

On Sunday 30 July 2017, 200 individuals will don a Santa hat and speedos and run around Canberra’s Lake Burley Griffin to raise funds and awareness for cystic fibrosis.

‘Head Santa’ for Cystic Fibrosis ACT, Heidi Prowse, says the funds raised on the day will go towards providing practical support services, such as equipment, nutritional supplements and sport and recreation grants that will help local families living with cystic fibrosis live longer and healthier lives.

To find out more information about Cystic Fibrosis ACT and the Santa Speedo Shuffle, click here.

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Sally-Anne Clark

Sally-Anne is a super proud, super worrying mum of a sweet, salty girl, and a tradie’s wife with a serious coffee addiction. Proudly, Canberra born and bred, she spends her days working in communications and media in the public service and by night tries to do far too many things at once while trying to keep her sanity! Sally-Anne loves her Thermomix, couldn’t survive without her family and fiercely believes in the healing powers of solid female friendships! More about the Author

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