Cystic fibrosis: "I cried for my child every day for five years."

These are the words of Donna O'Neill Eaton, about her son Saxon, age 7 [pictured above age 5].

"Cystic Fibrosis (CF) is not something any parent wants to hear that their "seemingly" perfectly newborn healthy baby has. 

Some parents of a CF baby get to believe that for three or four weeks after the birth - they believe what they have is a 'perfect' and healthy baby. 

Then you receive the news - it is picked up from the newborn heel prick test - and life as you know it will never be the same again. 

And you grieve for the loss of that perfectly healthy baby you thought you had. For me I grieved for five years, and for those five years I pretty much cried every day. To me it was like a "death".

One of my closest friends was grieving for her brother's death at the time and when she talked to me about how she felt, I knew exactly what she was feeling as I felt the same. Yet here I was holding my baby in my arms.

Cystic Fibrosis is the most common, genetically acquired, life-shortening chronic illness affecting young Australians today. It primarily affects the lungs and the digestive system, however, it also affects a number of other organs and systems. 

Complications increase with age, requiring ever increasing levels of (self) care and support. On average one in 25 people carry the CF gene (most of whom are unaware they are carriers).

Every parent's story of a child with CF is different. I know we have been very lucky with Saxon's health, as far as CF goes. This also made me racked with guilt as I constantly felt guilty about feeling so bad about his diagnosis, as health-wise he was really healthy for a CF baby.

I am in contact with many families and young adults and some older adults with CF. It is very hard to read about all the hospital admissions, the treatments that they are doing, the pain associated with some treatments and procedures. As is seeing the children on the lung transplant lists, and the children and adults that didn't make it before donor lungs became available. 

It would be so lovely to be free of these constraints of living without being in constant "flight and fight" mode. But that is life as a parent to a child with CF. Our children are amazing; they are put through so much yet always - once through it - bounce back like nothing happened, with giant smiles on their faces, ready to take on what life has to offer. 

It would be so lovely to be free of these constraints of living without being in constant "flight and fight" mode. But that is life as a parent to a child with CF. Our children are amazing; they are put through so much yet always - once through it - bounce back like nothing happened, with giant smiles on their faces, ready to take on what life has to offer. 

Our fundraiser is called "65kms for Cystic Fibrosis" and we are doing a non-stop relay of 65kms on a treadmill at our local gym, Jetts Fitness, Peregian Springs, this Saturday May 12.

Our donation page is http://www.everydayhero.com.au/65_kms_for_cystic_fibrosis and we hope to raise $6500 for the Cystic Fibrosis annual fundraising day, '65 Roses Day.'"

The constant battle that we as parents go through and what our children have to go through because of CF: there is not one hour in the day that I don't think about Saxon's CF when he is with me. 

For example I take him to school and hear a child in his class cough; my instant reaction is, was that one of his friends? Do they sit near him? And then I analyse what type of cough I think it was - wet/dry? 

Or, I hear him do a little cough and my ears prick up and I silently hope that it was nothing, and he was just clearing his throat. And on it goes.

And its not just about coughs, but the washing of hands with antibacterial soap - anything less than perfect is not good enough. Keeping away from stagnant water, the hose water [as it's untreated tank water], even the neighbour washing his car! It's all about bacteria - which you, as CF parent learn - can be extremely harmful.

Certainly, it teaches you the value of life and living it. That is why me and three other CF mums have decided to set up a fundraiser, inspired by the incredible amount of life that our children have and to inspire us to do something to create more awareness and much needed funds that can help so many living with CF, which will hopefully aid our dream of CF not being an abbreviation for Cystic Fibrosis anymore; instead for: "Cure Found".

Do you have a child with CF? Please, share your story below. If you'd like to be a part of Donna's fundraising efforts, please click away at links above.