A is for Awareness

Our 65k 4 65 Roses walk finished just a few weeks ago and I have already gotten involved in another awareness activity for Cystic Fibrosis. People are going to start thinking that promoting CF is a favourite past time of mine! Well, believe me, it's not. So why dod I do it? Well, the obvious answer is because my youngest daughter has this disease. But that in itself is not the reason. There are a few other reasons why I pour my energy in making my community more CF aware.

One reason is, CF is a common disease that is not very well known. There are no major ad campaigns, no posters in shopping centres. It is not very well marketed. That sounds quite callous, I know. But the sad truth is, if you want to raise money and awareness for a cause, you have to sell it. I don't believe that this happens with CF. And why not? One baby every 4 days will be born with this disease. It has no cure. It is terminal. It is ruthless. It is everywhere.

The other reason is, awareness can lead to fundraising. The reason that most people with CF are now reaching adulthood is because of medical breakthroughs. Research into physio, medication, diet etc etc. But this doesn't come cheap. We are competing for your fundraising dollars and we want to show you exactly what you are buying us.

In Australia, Cystic Fibrosis is symbolised by a red rose.
www.cysticfibrosisaustralia.org.au

Which leads to my next reason. Awareness is a sign of hope. A cure for CF is a future possibility. Fingers, toes and everything else crossed! We are not a lost cause! We are a cause with a light at the end of the tunnel, we want you to join us on this journey, and help us reach that goal, and share in the joy of curing this disease.

And finally, for me, a burden shared is a burden halved. Well, maybe not halved, but I do find it therapeutic. And, at this stage of our lives, I have the ability to share, and blog, and Facebook nd the rest of it. I'm sure a time will come where I don't want to write anything about CF, or Ruby doesn't want me to. There will come a time where I simply don't have time, or the mental energy. But for now, I can so I will. And when I can't I'm confident there will be someone else affected by CF doing it instead. We all take our turn.

So for the next 25 days, we will be bringing you The A-Z of Cystic Fibrosis. Today, for the letter A I have chosen AWARENESS so I'm going to leave you with some awareness campaigns from around the world. Because all over the world, we need a cure.

Eva's story is one of love and hope. Her journey of sickness and transplant was filmed and documented. You can learn more about Eva at www.65redroses.com

Cystic Fibrosis is also known as 65 Roses, due to young children not being able to pronounce it properly. The Wolverines have a famous song "65 Roses". It's very touching and explains a lot about having someone in the family with 65 roses.

TV Commercial for Cystic Fibrosis NZ, filmed entirely underwater - no computer tricks - all real, using NZ champion free divers. 

One More Step

This Saturday, a team of people are going to do an amazing thing. They are going to walk 65km in a day. That's a BIG walk, probably bigger than what a few of them realise!

To be honest, I don't really care if they do 65k or 65 steps. The fact that they have joined our team is enough for me. That in itself speaks volumes.

But for the ones who have a personal goal of going the whole distance and are looking for extra motivation, this is for you. When you are struggling for breath, when your legs are wobbly, when the last lap seems so far away, think of this.

Think of Ruby's start to life, a major operation at 3 days old - take one more step
Think of the little needles and tubes that she had in NICU - take one more step
Think of the scars that some of them have already left - take one more step
Think of the infections ruining her lungs - take one more step
Think of the invasive tests and prodding she has at every clinic visit - take one more step
Think of the many meds she has to have to survive - take one more step
Think of the physio she has to do every.single.day - take one more step
Think of the years that she will miss out on - take one more step
Think of the way that her breath will be laboured (like you on your 5th lap) - take one more step
Remember that this is how it will always be for her - take one more step

Think of the cure that is currently being worked on - take one more step
Think of the difference YOU are making - take one more step
Think of how much this means to us - take one more step.

www.mycause.com.au/teamruby

Thank-you.

Dear Blog

Dear Blog, 

Sorry I haven't written here for a while...the world has been finding things for me to do lately. I promise I will return and offload all of the things going on in my mind when the universe slows down just a tiny bit. I am at the end stages of the Team Ruby auction (still trying to buy my baby a cure), another side project that just seemed to snowball into something amazing. Once again I have under-estimated the compassion and generosity that people have shown us. It makes me wonder what we have done to deserve this wonderful support, instead of letting me wonder why we deserved to have CF in our lives at all.

Ruby has been waking with severe tummy pains throughout the night so I have been tired, even too tired to come and visit you. I haven't had a good entry in a while. I know I posted many times in May for 31 Days of May, the Cystic Fibrosis Way but they were more for awareness purposes, not lightening my emotional load.

So thanks for waiting for me...