Lorna Anderson cuts back on her daughter Sadie's social contact during the colder months, in a bid to reduce the 2-year-old's chances of catching infections.
"In winter we hibernate, avoiding coughs and colds, which is very hard. I just don't take her out to activities and I wash her hands a lot to prevent her from getting sick."
"If it goes to her chest she's likely to be on antibiotics or go to hospital."
Cystic fibrosis increases the risk of repeated chest infections, which can progressively damage the lungs.
Sadie, who has a brother, Raphael, 5, was diagnosed with cystic fibrosis when she was three weeks old, following initial suspicions from the heel-prick blood test done at birth.
"Initially it was a shock. We didn't know of cystic fibrosis in our families; we didn't know what cystic fibrosis was," said her mother.
"My husband, Harley, took it harder than myself. I accepted it fairly quickly and got on with what I needed to do."
Sadie has not had any stays in Starship this year. Last year was different: She spent two periods of a fortnight each in the children's hospital on intravenous antibiotics
"We've been pretty lucky, actually, that she has been pretty healthy," said Lorna.
Sadie's daily treatment involves taking digestive enzyme-replacement granules, to help her digest food, a chest physiotherapy session done by her mother to help loosen the thick mucus, and plenty of physical activity.
Sadie loves to bounce on the family's trampoline and in the warmer months she goes to gym and dancing sessions.
When the Herald visited, Sadie, dressed in a dog costume, had a good bouncing session on the trampoline before she changed into her pink dinosaur suit and started roaring.
Starship's director of community and medical services, Dr Mike Shepherd, said the hospital's patients benefited from the international improvements in managing cystic fibrosis, as children and when they moved on to adult health services.
"We've made dramatic advances across the world in survival and not just the length, but also the quality, of life for people with cystic fibrosis."
These included better understanding of when to use antibiotics and which ones to use, how to maintain lung function with physiotherapy, improvements in nutrition therapy, and the use of lung transplants.
What is cystic fibrosis?
• Inherited genetic disorder
• NZ incidence: 1 in 3000 live births
• Causes thick mucus which can and block airways and lead to lung infections
• Can also cause problems with the pancreas and digestion
• No cure
• Treatments can include chest physiotherapy, a high-energy, high-protein diet, enzyme-replacement therapy, antibiotics, lung transplant