Christie Caulfield knew nothing about cystic fibrosis when her daughter Macie Checkley was born 18 months ago.
But then little Macie was diagnosed with the serious genetic condition at the age of five weeks, and the time that has followed has presented a learning curve that has been at times difficult, both emotionally and financially.
But Ms Caulfield said the assistance she had received from the Bendigo Cystic Fibrosis Support Group after moving to the city a year ago had helped her tackle the challenges presented by Macie’s condition.
Read more: Living with an ‘invisible’ illness
To give back to the group, Ms Caulfield has organised a trivia night fundraiser, to be held next weekend.
“It’s been good to be able to support them, because they’ve supported us,” she said.
She said the group had been “amazing” in its support since she met president Kristy Hunt at a Cystic Fibrosis Victoria charity run last year.
Ms Caulfield said the group had helped her emotionally, with other members having experienced the same things she and Macie were going through.
Cystic fibrosis added to the challenges of parenting, she said, and there were times when she was unsure whether something Macie was experiencing was normal, or something she needed to worry about.
Ms Caulfield said the group had also provided invaluable financial assistance, helping her with trips to the Royal Children’s Hospital in Melbourne, and even contributing to a trampoline for Macie and her big brother Slater.
“Financially, I don’t know how we’d get by,” she said.
Cystic fibrosis is an incurable, life-limiting condition that mostly affects the lungs and digestive system.
Macie undergoes at least 30 minutes of physiotherapy a day and takes medication through a nebuliser, to loosen the mucus in her lungs.
She also has antibiotics every day, enzymes every time she eats, vitamins, and a salt mixture to combat an excessive loss of salt from her body.
If Macie falls ill, it can be much harder for her to shake than it would be for another child.
The Bendigo CF Support Group trivia night will be held at the Bendigo Bowls Club at 6.30pm on Saturday, November 25.
Tickets cost $20. To book, call Christie on 0423 047 638 or email email@example.com.
Another member of the group, Kayleen Lamprell, will also shave her head on the night in a bid to raise money for the group.