Cystic fibrosis breakthrough: Christchurch family celebrate Trikafta milestone

“Once Trikafta came through for us, we knew we had to go big!” enthuses Eddie, who adds Noah loved every minute of his three-day celebration.

Trikafta is the first drug to treat the underlying cause of CF and has been funded in New Zealand for people 6 years and over since 2023. Desperate to get help for their son, at one stage, the young couple thought about moving to England or Australia to access it.

“Why wouldn’t you do everything you can to get lifesaving medication for your child?” asks Emily, 30.

Eddie adds, “Luckily, New Zealand came on board, and we can stay here and continue to be proud Cantabrians!”

Eddie and Emily – who’ve been together for 13 years and married for three – got their first inkling something was amiss with Noah’s health at her 20-week scan.

“Because it’s an inherited genetic condition, Eddie and I were sent for blood tests, and were shocked to find we were both carriers,” explains Emily. “That meant Noah had a 94% chance of having CF, which was confirmed by tests a few days after he was born. It wasn’t the start to parenthood we’d envisaged.”

Eddie and Emily got their first inkling that something was amiss with Noah’s health at her 20-week scan. Photo / Selina Nunn

The couple spend about two hours a day guiding Noah through a complex care routine, which includes nebuliser and cupping sessions each morning and evening to manage his mucus, plus regular doses of creon, a pancreatic enzyme replacement and other vitamins throughout the day.

While some CF children struggle to put on weight as the condition makes it difficult for their bodies to absorb protein and fat, Emily says they’re lucky Noah has been in the 98th percentile for his size since he was born.

“He’s huge!” she grins, adding his dietary management has still been the biggest learning curve for the couple. “The creon has to be taken with food containing a specific amount of fat. A lot of mathematics goes into it.”

To avoid bugs and germs, they’re also careful where they take Noah.

“Swimming pool changing rooms are a no-no, but there are so many places Noah can go and things he can be involved in,” explains preschool teacher Emily, adding they’re lucky to have “incredible support” from family, friends and the team at Cystic Fibrosis New Zealand.

Eddie, who manages a Christchurch preschool, says Noah is an “absolute champ” for the way he accepts his routine and they’re hopeful it’ll get easier in time now Trikafta has been added to the mix.

The drug will help Noah live healthier. Photo / Selina Nunn

“Considering everything he’s got going on, Noah’s a pretty happy-go-lucky kid,” Eddie tells.

The active boy loves to sing, putting the new microphone stand he got for his birthday to good use.

“Noah’s obsessed with Justin Bieber and, after watching some of his Coachella videos, has been lining up his teddies to watch him sing,” smiles Emily. “He also got a doctor’s kit from my brother and already knows what each piece does, which is not typical for your average 2-year-old!”

Although it’s still early days, Trikafta should help to thin Noah’s mucus, leading to far fewer infections, less scarring and a significantly lower risk of him requiring a lung transplant. It will also assist his body to absorb nutrients better.

Best of all, the drug will help Noah live healthier, with his life expectancy increasing around 15 or 20 years.

Emily enthuses, “We’ve heard some great stories about people on Trikafta overseas who are moving out of home, having relationships and kids, and even running marathons and Iron Mans. That’s what we hope for Noah – that one day he’ll get to live like a normal Kiwi kid, doing all the same things as his friends.”

May is Cystic Fibrosis Awareness month. To learn more, go to cfnz.org.nz.