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This is the most fun you will ever have fundraising.

Caroline and her family.

By CAROLINE IVORY

Imagine a household with a part-time working mum, two school-aged kids, a 4 year old kinder kid and a mischievous 2 year old. Throw in before and after school activities for the older children, day time activities for the younger children, housework and meal planning.

Now just to top it off, add in two children with an incurable disease called Cystic Fibrosis (CF), which demands constant attention to diet, medications, exercise, physiotherapy and lots of hospital appointments.

Welcome to my life!

When my first child Aiden was born in 2002, despite being breastfed every hour, by 5 weeks of age he was failing to thrive. He would scream constantly with awful stomach pains and producing foul nappies almost every hour. I questioned my ability to mother. Was this what motherhood was meant to be like?

And then came the day of diagnosis when my life was turned upside down. My heart broke that day when I heard of the battle that lay ahead for him. Within days of diagnosis, the marvelous respiratory team from the Royal Children’s Hospital were trying to teach me everything I needed to know about CF and how to care for my little man, so that he could begin to put weight on, and become a happy little boy that I longed for. I learnt about administering medications to a newborn, tackling physiotherapy on a wriggling child, the importance of calculating fat contents and trying to keep my little man free of colds than are rampant among babies. I was explained that in the future years, he may require “tune ups” – which is CF talk for intravenous (IV) antibiotics for two weeks to remove the lungs of the bacteria which can be resistant to oral antibiotics. He would also require general anaesthetics to insert the IV line. Plus having bronchoscopes to view the inside of his lungs and get samples of bacteria when necessary. Now that sounds like fun… I was beginning to feel more and more like a nurse than a mother.

Fast forward to 2004 and I fell pregnant with my second child, Alicia. Her life began very differently. When I was 15 weeks pregnant, I had an amniocentesis to see if she would also be born with CF. I clearly remember the day when I was told that she too would have a battle ahead of her and my heart broke for a second time. The benefit of an early diagnosis meant that from her second day in the world, she was having enzymes to break down the fats in my breast milk. She quickly gained weight and was a happy baby, but still provided me with plenty to keep me busy!

It wasn’t until my third and forth child (Emma and Jack) that I found out that mothering wasn’t all about administering medications, completing daily physiotherapy and calculating fat content! Oh the bliss, this was easy!!

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Alicia Ivory

We’ve now been through numerous tune ups, Aiden has them about 3 times a year – and I say “we” as it effects the whole family. Generally who ever is having the tune up will stay in hospital for 4 nights, it involves a general anaesthetic for the line insertion, numerous tests and multiple physiotherapy sessions.

During this period, the kids are juggled with grandparents and aunts so their lives can stay as normal as possible. We then go home but remain under the care of the Hospital In The Home nurses who will visit daily to administer the intravenous antibiotics and check on their health. Occasionally we have a “double tune-up” – both Aiden and Alicia will come in at the same time. If you ask me how many general anaesthetics the children have had, I would have to honestly say, I don’t have a clue, I’ve lost count.

Creating a family meal that suits everyone’s needs has become second nature. Tricks of adding butter and cheese to main meals so that the younger children don’t notice. I tell Emma and Jack that “salt is yucky”, whilst making sure Aiden discreetly get a big sprinkle. Our favourite trick is special full fat, treat loaded milkshakes once Jack and Emma are in bed. They certainly can’t eat in the same manner as their older siblings, as much as they would like to!

I talk with Emma about how Aiden and Alicia’s bodies don’t work the same as ours do. Hoping that she doesn’t feel left out when the Royal District Nursing Service visits with both the nurse and physiotherapist to see Aiden and Alicia. We talk about how their bodies need more food and they can get lots of sore tummies. Thankfully Jack is still blissfully unaware!

CF is not only a time consuming disease, but also has a way of draining the bank account. Medicines ( the size of my medicine cabinet would amaze you), purchase of nebulisers, high energy meal replacements, physiotherapy mouth pieces, car parking for hospital trips, swimming fees, vitamins all add up. Thankfully Cystic Fibrosis Victoria (CFV) provide myself with a significant amount of financial support to help lessen the burden. They also provide the emotional support that is required, from people who understand. If you want to learn more about CF and the work of CFV, please visit www.cfv.org.au or its active Facebook site at www.facebook.com/CysticFibrosisVictoria

As a family, we often do some great inside physiotherapy sessions. Our house has a lovely long hallway and we regularly use it for running and beanbag races plus our favourite, the Angry Birds game (soft angry birds get thrown down the hallway at a human target – run!). And our inside trampoline gets a real workout during the colder months. The ideas the kids come up with for inside activities is never ending.

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So now, in 2014, with my four marvelous children in tow, we try to maintain an active lifestyle, adding enjoyable exercise into our hectic daily lives to help keep my eldest children as healthy as possible. The benefits are we all stay healthy!

Alicia with siblings Aiden, Emma and Jack at the launch of The Big Bounce.

This is our life and we try to make it as normal as possible, and not to lose anyone along the way.

On a routine visit to the Cystic Fibrosis Victoria Facebook site, I saw that they were about to launch a new month-long event called The Big Bounce, where participants could raise money for CFV’s vital work through a very healthy and fun exercise – bouncing! This seemed like a perfect match for us and with a click and a like, we were at the launch on 1 July and were even written up in the Herald Sun in the following days. The kids and I had such a great time with the other families and Alicia came home inspired to launch her own Big Bounce challenge.

Throughout the month of July, Alicia is FUNdraising to support CFV and show how enjoyable exercise can be, its great health benefits and raising money at the same time. Alicia has all 5 of us bouncing for 9 minutes each day to raise as much money as she can!

Please visit her fundraising page here.

It’s easy to get online and donate and the smile on her face when she sees her fundraising total increase is priceless.

What is cystic fibrosis?

Cystic fibrosis is a genetic disease that effects the lungs and digestive system, clogging them with sticky mucus that causes irreversible lung damage. The pancreas cannot properly produce digestive enzymes to break down fat, causing diarrhoea. The enzyme replacements need to be in proportion to the amount of fat. A snack with 3 grams of fat might only need 1 enzyme, but a snack with 15 grams of fat would need 5. Not enough enzymes and diarrhoea will result. The body has to work significantly harder, requiring a diet that is high in energy, fat, salt and sugar. At a rough estimate, over 30 tablets a day are taken just to keep healthy and maintain normal growth. Each and every day involves physiotherapy to assist in removing mucus plugs from the lungs. Add in daily nebulisers, and lots of daily exercise to keep the lungs working hard.

Exercise is recommended for all of us in order to lead longer and fuller lives, but for people with CF exercise is vital. Trampolining tones muscles, burns fat and boosts the metabolism. Just ten minutes of a skilled bounce routine can be the equivalent of a 30 minute jog, and because the mat absorbs impact it’s easy on joints and bones. It’s impossible not to smile while bouncing: try it!

For more details on The Big Bounce event and to register your event, go to: everydayhero.com.au/event/thebigbounce or cfv.org.au, call 9686 1811 or email [email protected]

Premium trampoline manufacturer Springfree has leapt in with support for The Big Bounce by donating a Springfree Trampoline Compact Round (including Australia-wide delivery) valued at $1205 to the top fundraiser who lodges his/her Big Bounce event on Everyday Hero.

Please share this post to help raise support for The Big Bounce – or get bouncing yourselves. 

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