Mackenzie and Maddie Palmer have been campaigning for the drug Trikafta to be more widely available and subsidised, much like it is in Australia.
"The studies show that it has a really massive impact.
"It hasn’t really been around long enough to have full evidence, but there’s a lot of promising results so far in terms of quality of life and length of life."
The government announced provisional funding for Trikafta last month, but the Palmer family are waiting until April 1, when they will find out whether Pharmac will fund new treatment options for people living with cystic fibrosis, including young children.
Should it go ahead, the Palmer family would be "absolutely relieved".
However, if the approval did not go ahead, then Mrs Palmer said they were seriously considering moving to Australia.
"I mean, it’s not nice to have a decision taken out of your hands and all of our family and our support network is here, so it’s not something we would choose for ourselves.
"But if it’s the only option to help Maya, then we will do it."
Cystic fibrosis is the most common life-threatening genetic condition affecting New Zealand children. It is a genetically inherited condition some people are born with that mainly affects their lungs and digestive system.
The couple found out about Maya’s condition in the 30th week of Mrs Palmer’s pregnancy.
"We’d never heard this word before, but after some Googling, kind of found the extent of what it can be and how scary it can be, so we did a lot of learning in those four weeks before she arrived. We moved up to Christchurch so she could be born where there’s paediatricians.
"Since then, we have tried to live as normal as possible."
Mrs Palmer said there were surprisingly strong support networks.
"Maya’s had quite a difficult journey and has spent a lot of time in hospital, so it is difficult to not be able to connect with other families like that, but we do have a really good support network of friends and family around us, and Maya’s very loved as well."
Cystic Fibrosis New Zealand estimates about 55 children a year would benefit from Trikafta.
"It’s a lot of money for the government, but also a lot of money for the families, because they do have to fund it themselves.
"Although to some people it’s just another decision the government’s making, for us it’s life or death."
Maya, who has been a regular at hospitals during her 18 months, was a "very happy" child, Mrs Palmer said.
The drug has been estimated to potentially improve children’s lifespan by up to 25 years.
"I mean, it would be life-changing.
"We would be able to stay in our home and around our family and, hopefully, Maya would respond well to the medication, and she would be able to live a better quality of life, and we would have less hospital sufficiency, and ideally, a longer life for her."
