Living with cystic fibrosis has a huge impact not only on the health, but also the lives of the more than 500 people who live with the genetic condition in New Zealand.
Newshub's Alice Wilkins talked to two 15-year-old twin girls who have lived with the disorder since birth and found out the big decisions that lie ahead of them.
Manaia and Lili Graham are identical twins, but they have as many differences as similarities.
"I want to be a singer or an actress," says Lili
"A mechanic or a singer," says Manaia.
And one is slightly more camera-shy than the other.
But along with looking the same, the 15-year-olds have another major thing in common - both have the lung-damaging condition cystic fibrosis.
"Sometimes it can feel like a brick crushing you, or just like someone really heavy sitting on your back," says Lili.
The twins have been in and out of hospital since they were born. The genetic disorder rules their lives and it comes with a life expectancy of just the mid-thirties.
They take piles of medication, use nebulisers every day to release the mucus in their lungs and feeding tubes at night to keep their weight up.
Yet Manaia and Lili don't tell anyone they have cystic fibrosis.
"We wanna be normal or, you know, like, seen as normal people," says Lili.
Sue Tumataiki, the twins' grandmother says: "It's easy to forget how unwell they are."
But a reminder recently came in the mail for their nana, her granddaughters facing the prospect of future lung transplants.
Lili doesn't want one while Manaia is open to the idea.
"There is some good sides to it, but then the bad sides always get to my head,' says Manaia.
"Lungs aren't just readily available, so if they both wanted them but only one could have them? What if they both got them and one didn't survive it? They're twins," says Sue.
There is a way they could avoid those scenarios altogether, a cystic fibrosis medication called Trikafta. It's been described as a miracle drug, but the cost is eye-watering - around $400,000 a year, for one person.
"I don't have one, I have two - so you know it's not something you can just have for a little while, so no, we would never be able to afford that," says Sue.
Trikafta is still unavailable in New Zealand, but there is movement. Manufacturer Vertex is working on applications for both Medsafe and PHARMAC.
But the twins don't just want that option for themselves, they want it available for everyone in their position, and that's why they're finally sharing their story.
"You get told like, you won't live up to see your teenage years, so then, I want younger people to like, have a future," says Lili.
"They're 15 years old and they have all these hopes and aspirations, but if you're fighting each day to just get through each day and to live, I want them to have a life," says Sue.
