WOW!!! I am overwhelmed by the responses I am getting from my blog! I can’t believe it. I never thought I would get this many viewers, especially after only four blogs in less than a week! Its amazing!
My main goal of this blog was to basically use this as an online diary. To share my thoughts. But in the space of a few days, it has turned into so much more than that!
I knew there was a lack of understanding about CF. I want to change that.
I want to help provide more support for families. We live in regional Australia. I am a member of a state CF organisation (CFWA) who do fabulous for patients and their family members. They do Mum’s pamper days, sibling camps, constant fundraising. But there is a problem. While its available to us, most of it in the capital city of Perth…4-5 hours away!
I’m not saying that they havent done anything for us. They gave us a $600 nebulizer when my son was diagnosed. They also apparently fund one trip to Perth a year. We have yet to take them up on this offer though.
But I am noticing more and more that there isn’t much support for CF families. When our son was diagnosed, we were told not to turn to other countries for information, as the treatments and experiences a vastly different. However, any Australian website I have looked at, the forums havent been used in months, sometimes years, and I have found myself turning to international websites for my questions/support.
So there lies my mission to provide support for Australian (and even international) families. Even if it is just to read along and know that you’re not alone!