Nikki Reynolds knows how quickly life can be taken from you. She watched her sister lose a battle with her own body. Now Nikki may be able to live life to the fullest herself, but she’s found she’s having to fight harder than ever.
When Woman’s Day last caught up with Nikki and her older sibling Kristie Purton – known as the “Cystic Sisters” – in 2017, their cystic fibrosis (CF) meant they had to stay physically separated so they didn’t make each other ill. But their bond was a force to be reckoned with and they were as close as two sisters could be.
Sadly, Nikki now feels alone in her struggle after Kristie passed away in 2019, when her body rejected what they hoped would be a life-saving lung transplant. Both sisters underwent the operation, yet only Nikki, 31, survived.
She was optimistic, but tragically Kristie’s lung transplant was not a success.
Some days, she says, the frustration is unbearable. If funding for the drug Trikafta had been approved in New Zealand, there’s a high chance Kristie would still be here today.
“Trikafta was around when Kristie was alive – it just wasn’t talked about,” tells Nikki. “It would’ve been a much better alternative for her because we know transplants aren’t for everyone. For years, Kristie would often battle infections and if another option was offered, we absolutely would’ve taken it. “
It’s estimated that 388 Kiwis who live with CF would be eligible for the treatment, which is close to being fully funded in Australia.
“In 2021, Pharmac announced that funding was a high priority, but it’s been months and it feels like we’re just going backwards,” explains Nikki. “Kiwis with CF and their families don’t have time to wait. It’s torture for those who can see the benefits of Trikafta but cannot access it. The longer they wait, the more lives will be lost.”
Nikki says transplants aren’t a cure for CF and it’s the last resort for many sufferers, who think of it as swapping the condition for another disease. They have to take medication for the rest of their lives and there are many side effects.
Even though Nikki’s transplant was successful, she has a lot of stomach problems and still suffers from diabetes. “None of those things ever go away,” laments Nikki.
Trikafta costs about $40 in Australia and has been available for just over 12 months. Here in Aotearoa, it costs around $330,000 per person every year.
“I have friends in Australia who are on it and their lung function has improved so much, they don’t need a transplant,” says Nikki.
“I know of six families who are ready to up and move there just to get the drug. By taking it, you’re pushing your life expectancy out hugely.”
Kristie was just 36 when she died and left behind three children, sons Zack, 19, and Curt, 14, plus daughter, Haylee, 11.
Kristie’s brave kids (from left) Zack, Haylee and Curt were her strength.
Nikki says she and Kristie were always extremely close and supportive of one another. It helped to have someone who could completely relate with the daily challenges of battling a disease like CF.
“That’s what I struggled with most when she died,” says Nikki. “I didn’t realise we were like one person – she was my other half. It’s been hard. I know other people with CF and it’s nice to be around others who understand, but it’s not the same. No one thought like me and Kristie.
“We were really sarcastic and made a joke out of everything. Before she died, I said to my partner Brian, ‘I’ll never laugh again like I did with her.’ And I haven’t. It was something completely special and I’ll never have that with someone else.”
The sisters became even closer when Nikki had her daughter, Skyla, now 10. Skyla and her cousin Haylee are just six months apart. The tight-knit families have been a source of strength for each other, especially when Nikki’s father Peter died only eight months after Kristie.
Nikki is embracing her second chance at life with Brian and Skyla.
“Kristie’s kids have all amazed me,” tells Nikki. “They are so resilient. But it was hard on everyone, first losing Kristie and then Dad only a short time later on Christmas Day. He was only 67.”
After losing Kristie, eight months later, the family was hit hard by the passing of dad Peter (above front) on Christmas Day.
Nikki recently moved from Tauranga to Christchurch with Skyla and Brian, 31, in the hope of finding an affordable house to purchase. But they plan to return to Tauranga in a few years’ time to be closer to Nikki’s mother.
“After losing Dad, it was hard on Mum,” says Nikki. “Losing a husband and daughter isn’t something anyone can be prepared for. There’s only three of us now and we’ve all had to adjust to a completely different life without Dad and Kristie. I’ve become closer to my brother Mark. He’s always quietly been there for us and now I need him more than ever.”
The trio have started a new life in Christchurch with pups Roxy (left) and Blu.
With the support of her family, Nikki has continued to help bring awareness to CF and the issues with Trikafta. She has set up an Instagram account, @nikki_kickf, and is in the beginning stages of writing a book to help other CF sufferers know that they’re not alone.
“People keep asking me why I’m pushing for the drug so badly because I don’t need it myself,” explains Nikki. “But Trikafta is an investment in the future and lives of people with cystic fibrosis. It would provide major economic benefits and would reduce the burden on New Zealand’s healthcare system.
“And if other people don’t have to go through what we’ve had to go through – having that feeling of just missing out and knowing there was a chance their loved one could have lived for longer – then I know I’ve achieved something for Kristie and for so many families.”
