Two families who have been affected by cystic fibrosis (CF) are having two different experiences to the other because one of them can't get access to the 'miracle' drug Trikafta.
The drug is still not available to many sufferers because Pharmac is still in discussions with the manufacturer Vertex.
Watching James and Emma Lambie with their two-year-old daughter, you can tell how happy they are to have each other because four years ago their family was minutes away from being torn apart by CF.
"About four or five years ago I actually lost my fight with CF and I was very lucky that Emma was there to fight for me, she did CPR on me for ten minutes to keep me alive," James told Newshub.
CF fills the lungs with thick mucus, and James' were so badly damaged that the 28-year-old suffered a major bleed in his right lung.
"Yeah I have had first aid training so I had an idea of what to do, I remember him fitting on me and I felt then he's still fighting," Emma said.
Emma managed to bring back James' heartbeat, buying them enough time for a chopper to land at their Paeroa farm and get him to hospital. Two months later they got married.
"Even the photographer was crying," Emma laughed.
When the now-married couple went to have their now two-year-old daughter Jess through IVF there was another shock.
"Unfortunately for us Emma also carried the same CF gene that I have too, she is also a carrier so that made IVF just a little bit more tricky."
James said their embryos had to go off for testing which could identify CF sufferers, which were pulled out.
James, who is half Kiwi, keeps himself active as a farmer but has had to sell to fund a raft of medication from overseas to help slow his lung decline.
James has never had Trikafta but moving back to the UK where it is available is now a very real option, to allow as much time with his daughter as possible.
"We want to see our kids grow up but we also want to see other kids grow up with CF," James said.
Two of those other kids are 16-year-old twins Lili and Manaia Graham who Newshub met last year when they first shared they had CF, their friends and teachers didn't even know.
Since then the twins have been given access to Trikafta which would normally cost more than $300,000 a year per person. It was a cost they couldn't afford, but their specialist put them up for Vertex's managed access program.
"We got a message from the pharmacy to say our prescription was being put through and they would let us know when it was ready and so me and Lili picked up the girls and we drove up there and sat outside Auckland hospital until it was ready," said the twin's nanny Sue Tumataiki.
"I remember we cried because we were so happy."
The twins told Newshub they noticed the difference overnight, after two months Lili's lung function has risen 47 percent and Manaia's 60 percent.
The twins now play sports, take part in kapa haka and have even starred in a music video.
