NAOMI Scott wants the whole world to know that cystic fibrosis need not be a death sentence.
The Maryborough mother of four has not only had to endure the sobering knowledge that the illness is incurable - she has often been forced to endure ridicule as well.
Occasionally overhearing comments like "if you gave up smoking you wouldn't cough so much".
Coughing up blood is part of the illness.
"And I don't smoke," Mrs Scott, 31, said.
"There is a whole negative spin if you have CF.
"The attitude more often than not is 'why bother ... you're going to die anyway'.
When I was 16, I was told that I would not live to be an adult.
"I was a little scared but accepted it.
"I had already lost friends to CF.
"I just assumed that sooner or later it would be my turn.
She was also told that she would never have a family.
"It is uncommon for women with CF to have children and I now have four children," Mrs Scott said.
She knew the toll CF takes on the body and that giving birth wouldn't be easy.
All of her children were born prematurely but they are all happy and healthy and the household is a joyous one.
"I have my good and bad days from having children," Mrs Scott said.
"My lung function has decreased and I am getting older.
"Thirty-one for an average person isn't old but for me to keep going and not have a transplant, it's pretty good."
A few weeks ago Mrs Scott's eldest son Rielly, 10, said that when the time came for his mother to receive a transplant, he would give his own lungs.
"It broke me but it made me stop and think how super blessed I am to have my babies," she said.
Mrs Scott admits she goes into hospital a little more often these days but compared to some others, she feels "pretty lucky".
However, after recently losing another close friend to the illness, she has decided to speak out about the disease and become more proactive.
"My friend Kerry passed away last month," Mrs Scott said.
"She was on the list for transplant but got really sick so I went and stayed with her for her last five days in Brisbane.
"She got the call for the transplant the day she died but before they could do anything, she passed away."
Mrs Scott said it was hard to watch on knowing she could face the same predicament.
"There's not really any awareness out there for women with CF to have children," she said.
"There is support for adults and children alone but not for women with families."
With that in mind, a group of Mrs Scott's friends have combined to provide a support service for her.
Raising money is an ongoing project for the group who have tagged themselves the Pink Girls.
Their aim is to alleviate the financial burden on the family so that Mrs Scott's partner Jason, who is a truck driver and the family's sole provider, can be with his wife when she needs him the most.
"It's stressful enough for them without the financial worry of paying bills," close friend Amii said.
One of the group's fund-raising ideas is via a Facebook page called Paid In Love Market.
Local gym owner Chris Black has offered Mrs Scott all the assistance he can give.
A close friend for 21 years, Chantelle D'arsie, is never far from Mrs Scott's side and said she was constantly amazed at her upbeat attitude.
"She is so positive," she said.
"They say the eyes are the window of the soul, Naomi's shining eyes are so beautiful, she is an inspiration."
- Cystic fibrosis is an inherited disease. It affects the secretory glands, including the mucus and sweat glands.
- CF mostly affects the lungs, pancreas, liver, sinuses and sex organs.
- CF has no cure.
- Treatments that include nutritional and respiratory therapies, medicines and exercise have resulted in improved lifestyle.
- It is uncommon for women with CF to have children.
- As treatments continue to improve so does the life span.
- Today, people who have the disease are living into their fifties and older.
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