Monday, 30 April 2012

Someone I love needs a cure...

The title says it all really,

Someone I love needs a cure for cystic fibrosis. My wonderful friends have a sweet, gorgeous girl known as Rose in internet circles. She is 7 years old, bright, bubbly, cheeky, funny.... trouble. She also battles daily with cystic fibrosis. Cystic fibrosis is a genetic condition that impacts the transportation of salt in and out of cells. This in turn impacts the whole body, especially the lungs and pancreas. This is such a basic explanation - this video does it so much better then I could.

What is important to note is that CF is the most common life threatening,  , recessive genetic condition affecting Australian children. The life expectancy for a person with CF is 37 years old. 1 in 20 Tasmanian's carry the CF gene, which is one of the highest rates in the world. THERE IS NO CURE, THERE ISN'T ANY GOVERNMENT FUNDING. There isn't a prenatal screening test on offer to the general public, like there are for other genetic disorders. The first time parents learn they are carriers of the CF gene is 8 weeks after their baby's heel prick, when the test results come in.

HOPING FOR A CURE: Ulverstone six-year-old Ebony Gay has a daily battle with cystic fibrosis. Today is 65 Roses Day - the national fundraiser to support people with the disease. Picture: Katie McDougall.
Rose' pic from The Advocate 2011

So everyday this gorgeous 7 year old kid needs physio to help move the mucus in her lungs, she takes dozens of creon tablets to help her body breakdown and digest fats, salt tablets to keep her hydrated, antibiotics, 2 sessions on the nebuliser, and is constantly nagged by everyone who loves her. She must get asked if she's taken tablets for her food, taken her antibiotics, to do physio, do nebs a gazillion times a day. Surprisingly she only does her nut every now and then, I know she must be so sick of everyone quizzing and bossing her all day, everyday.

Then theres her parents, we've known them for years. Spanner Wielder met Papa Rose when he was 15, so they've known each other for almost 15 years now. We met Mama Rose while we were living in Geelong. Papa Rose bought her to met us and we shot some pool that night.  Mama Rose was pretty quiet, I don't think she even played a game. Maybe she was put off by my mad pool skills - more then likely she didn't want to thrash me, like everyone else was. I can't play pool. If a ball goes in the pocket its no thanks to me, purly fluke. Anyways they stayed with us that night before heading home to Bairnsdale.

9 months later Papa Rose rang to tell us about the birth of their baby girl. I don't really remember much about hearing about Rose's diagnosis, or understanding what that meant. Even when we visited just before Rose's first birthday and saw them giving her tablets in jam and the huge quantities of butter in everything, the signs telling people to wash their hands as they walked in the door, I didn't really get it. 

Join The Rose Garden on Facebook to learn more about CF and the impact it has on a family
I still don't understand Cystic Fibrosis in any great depth, and do quick searches on Google when I need more info! This year Mama Rose has been opening herself up and sharing about how she, and their family, live with cystic fibrosis.She has created a group on Facebook called The Rose Garden in which she shares their personal journey, and information, about Cystic Fibrosis. Join up to learn more.

Can you imagine fighting for your child's health daily, knowing that eventually, and far sooner then you can live with, you will lose that fight. Mama Rose has started sharing more and more of the hard stuff with me and it breaks my heart. There is nothing I can say to ease this. I refuse to offer useless cliches of "taking every day as it comes" and "god never gives us more then we can handle" cause they're crap and Rose is so much more important then a cliche about a rough patch. There aren't support groups that Mama Rose and other CF Mama's cant attend, or camps for CF kids to attend with kids living the same experiences, because CF kids cant have contact with other CF kids. It must be so isolating. 

As a friend I feel inadequate, because there are no magic words. So we need a cure, not just for people with CF, but for their whole family. And since science isn't something I am good at, I have jumped on board to help Mama Rose raise funds and awareness.

Made from recycled atlas', story books and novels these roses are PERFECT for Mothers Day

We've made what feels like thousands of paper roses to sell at Bumps, Bubs & Beyond Market at Latrobe Memorial Hall this Sunday, the 6th of May, from 9am - 1pm. We'll also be selling  donated handmade items, and raffle tickets. 1st prize in the raffle is a laptop, so let me know if you want a ticket!!! We'll also be wandering the streets with basket-fulls of roses.

Alice in Wonderland
Some of my fav's are made from atlas' and golden circle books. I'm in love with the Alice in Wonderland roses, anyone who feels the same better be at the market bright and early, and you'll have a fight on your hands!!! For those of you who wont be able to attend the market you can donate by clicking here. Make a donation of $20 and let me know at the bottom of this post and I'll take a dozen storybook roses to a local children's ward. If you love these paper flowers as much as I do and want to make some yourself, please, please donate some cash first. Every dollar counts.

I'd also really appreciate if you could share this post EVERYWHERE, because a family I love needs a cure.


  1. Lovely Jade. One of my gf's has a daughter with CF. They had to do IVF second time round so their second child didn't get it. I never knew children with CF can't be around others with it?? Do you know why that is? x

    1. It is because they cannot risk catching bugs from one another, basically! Auntie S xx

  2. Jade,
    Thank you so much for sharing your knowledge, for giving your time, for being there for your friends. But most of all thank you for caring so much about a beautiful little girl and, in your own way, joining her battle with CF. It's because of people with huge hearts such as yours that the word is spread and awareness raised. I am so proud of you & your involvement in this cause. I wish for Rose as much laughter as possible.

    I would love to buy some roses but I am unable to be at the market, so I have made a donation. I wish you and all involved the best.

    I will share your post and ask friends to share it forward and please donate.

    All my love
    Aunty Diane