Earlier this month, two-year-old Indie Baron and her mum Krystal picked up a prescription from the Paeroa pharmacy – a moment that was anything but routine.
Instead, it was a “powerful” step forward for the family and for Indie, who has cystic fibrosis.
The script was for Trikafta, a medicine only recently made available for younger children in New Zealand, and Indie was one of the first under-6’s in the country to receive it.
Cystic fibrosis is a lifelong condition that affects the lungs and digestive system. Thick, sticky mucus can build up in the lungs, making infections more likely and worsening the damage. And while Indie looked like a “healthy, happy” toddler, mum Krystal said much of her condition happened out of sight.
“Since Indie was diagnosed, it’s been a journey of learning how to live with something that’s always there, even when it’s not always visible,” she told The Profile. “From just two-weeks-old, we were giving her pancreatic enzymes with apple sauce before every meal that contained fat or protein, and building daily routines around her treatments and care.”
Krystal said they have been lucky in many ways, with Indie remaining relatively healthy compared with other children with cystic fibrosis, and only needing a few hospital stays in her two years. But even on good days, she said, there was always an awareness of the condition in the background.
“Her days involve regular physiotherapy to help keep her lungs clear, frequent hospital check-ups, and carefully managing her nutrition with enzymes before every meal. She also deals with constant stomach pains and nausea, which can be tough for such a young child,” Krystal said. “Even something as simple as a cold isn’t so simple for her – it often leads to infections, requires antibiotics, and can turn into a prolonged cough that lingers. It’s a constant routine, and while she handles it all so bravely, it’s a lot for a little body to carry.”
Pharmac funded Trikafta for people aged six years and above in 2023. But in January, it proposed to fund the medicine for all age groups with cystic fibrosis. The change officially came into effect on April 1, and Indie got her hands on her first script two weeks later.
Trikafta works by fixing the faulty protein that causes cystic fibrosis, helping the body clear mucus more effectively, reducing damage to the lungs and organs and greatly improving quality of life.
Krystal said it was “incredibly emotional” hearing the funding news.
“A mix of relief, gratitude, and hope,” she said. “Knowing that there is a medication like Trikafta that can slow down the damage cystic fibrosis causes feels huge. For so long, it felt out of reach, so hearing it would finally be available for young children like Indie was almost surreal.”
However, waiting for Trikafta to be funded for under-6s had been difficult.
“There were moments of frustration and helplessness, especially during the tougher days or hospital visits,” Krystal admitted. “You just want to do everything you can for your child, and feeling like something important is out of reach is incredibly tough.”
Now Indie, who adores her big brother Zen and loves running with Paeroa Little Athletics, is starting a new chapter. She’s full of energy, curiosity, and joy, even as she quietly lives with cystic fibrosis.
“What makes us smile the most is how she embraces life so fully,” Krystal said. “She’s strong, determined, and full of love – and she reminds us every day to focus on the joy in the little things.
“Starting Trikafta means hope for a different future, and extending her life expectancy. It means
slowing down the progression of the disease and protecting her lungs and organs in a way we
couldn’t before. It won’t take cystic fibrosis away, but it changes the path she’s on, and that’s incredibly powerful.”
BY KELLEY TANTAU
