Nikki Reynolds-Wilson doing Sweatember in memory of her sister Kristie Purton. Photo / George Novak
When Tauranga Cystic Sister Nikki Reynolds was a child - getting out of bed was one of life's hardest challenges.
Now, she is tying up her running shoes and taking on her first half marathon.
Taking on challenges that once seemed impossible is central to Reynolds's life and shehopes others will do the same in the month September to raise awareness for the illness she battles and that took the life of her sister, Kristie Purton.
Reynolds was born with cystic fibrosis, a genetic condition that caused persistent lung infections and limited the ability to breathe over time.
There was no cure for the illness and life expectancy was less than half that of the average New Zealander.
She and her sister were well-known in Tauranga as the "Cystic Sisters" as they would annually do 65 good deeds around the community to spread awareness about the illness.
Purton died in March last year after her body rejected a lung transplant.
She now had Purton's ashes hanging inside a necklace on her chest so she was with her everywhere she went.
She made sure she talked about Purton whenever she could as a way of keeping her memory alive, she said.
A lot had happened in Reynolds life since losing her sister.
The cheer school that she owned with her partner had grown rapidly, her brother welcomed a baby girl to the family and she had even got engaged to her long-time partner.
Living in a Covid-19 world had been "terrifying" for Reynolds.
As an extremely immuno-compromised woman, she instantly pulled her 9-year-old out of school and did not properly leave the house for months.
Reynolds had been washing her hands regularly, wearing masks and keeping socially distanced from sick people most of her life as an illness as simple as a cold could turn fatal for her.
"I have pretty well no immune system so any sickness that could scar my lungs could cause a major infection."
The world had all begun living her reality, she said with a laugh.
Her sister had always been the sporty type, but Reynolds was always too sick to join in.
She said she had always dreamed of being able to climb mountains and be active like Purton.
It wasn't until three years ago at age 26 when Reynolds was blessed with a lung transplant that changed her life.
She threw herself into her cheerleading, began doing weights at the gym and has even entered her first half marathon in the coming months.
"I ran my first ever 5km the other day ... I couldn't even walk up the stairs five years ago."
Every time she ran, she would "pinch herself" because she could not believe she was doing it, she said.
Back when she was sick, she said she would try to build her fitness up but then she'd end up back in the hospital every two weeks and have to start again.
Reynolds used to only really be able to jump on the trampoline or hang upside down as it helped her cough the mucus out of her lungs.
She said Purton would have been unbelievably proud of her now and would be saying "look what you're doing".
"She'd be so proud."
Reynolds was also taking on a new initiative from Cystic Fibrosis New Zealand called Sweatember to raise awareness of the illness in memory of her sister.
The idea was people committed to any sweaty activity throughout September to raise money and get fit.
Campaign proceeds would be used to advocate for better access to care and medications, provide information, counselling, transplant and hospital support, and fund research.
Reynolds cheer squads were getting involved in the initiative, as well as Purton's very active young children.
She said Cystic Fibrosis NZ had supported her throughout her life and her CF journey, and to be able to give back was everything.
She also encouraged others to get involved and help raise awareness and money for a cause that had shaped her life and that of many others throughout the country.