Tauranga sisters Nikki Reynolds-Wilson and Kristie Purton live close to each other, raise their children collectively and spend every day of their lives together.
It’s a sibling bond unlike any other – borne by the fact Kristie, 32, and Nikki, 24, share the same crippling and incurable disease, cystic fibrosis (CF).
“We’re close because we know exactly what the other person is going through,” explains Kristie, who has three children with husband Craig – Zack, 12, Curtis, seven, and Haylee, four. CF is a genetic disorder that affects mainly the lungs and pancreas, clogging them with thick mucous. It causes a chronic cough, shortness of breath, repeated chest infections and can also affect the body’s ability to absorb nutrients.
“It can take me two hours to hang out the washing,” says Kristie. “I’ll be short of breath, cough, vomit, then lie down exhausted.”
“Cystic fibrosis is all we have known for a long time,” adds Nikki, who has a four-year-old daughter, Skyla, with hubby Brendan. “We don’t know what it’s like to be healthy.”CF has not only robbed the sisters of much of their childhood, but it’s now throwing their future into uncertainty too.
“I just want to last as long as I can for Skyla,” says Nikki. “I’ve started keeping a diary of advice and words of wisdom for her when she’s older, just in case I’m not around.”
Nodding, Kristie continues, “The hardest part about having cystic fibrosis, for me, is not being able to bounce on the trampoline with my kids and run around after them.” Says Nikki, “Put it this way, we don’t think about how old we will be when we die. We think about how many years we have left to watch our kids grow up.”
Kristie’s terrible diagnosis came when she was three. She recalls, “Doctors told Mum I was fine, but she demanded tests – she knew something wasn’t right. I was a really grumpy baby, with lots of sinus and bowel issues.”
A baby can only be born with CF if both parents carry the defective gene and, after testing, both Kristie and Nikki’s mum and dad were found to be carriers. Once she was given the right medication, Kristie was relatively healthy and active until she was almost a teenager.
“I loved to run,” she remembers. “That was the one thing that kept me going.” But in recent years, her health has declined. “I get out of the shower and I’m so exhausted, I need to lie down,” she says. Kristie’s lungs are functioning at about 35 percent of what they should and her condition is complicated by asthma.
Kristie with her kids (from left) Zack, Curtis and Haylee, and sister Nikki with daughter Skyla.
Missing out
Her younger sister was diagnosed as a baby and being sick is all she knows. “I missed four years of schooling because I was in hospital or sick at home,” tells Nikki. Her health has also gone downhill in recent years and a few months ago, she went on to an organ-donor waiting list.
The disease has not only ravaged her lungs, which operate at only 26 percent capacity, but also damaged her heart. Not a month passes without at least one sister being admitted to hospital, usually with chest infections. “At night, I need to sleep with oxygen,” says Nikki. “It’s hard for my daughter, but it’s the way I have been all her life. When I have a coughing fit, she rubs my back to comfort me.”
Far from sitting at home and feeling sorry for themselves, the sisters have channelled what energy they do have into random acts of kindness for strangers. “One day, we were driving home from getting treatment at Auckland Hospital and we decided there were plenty of people worse off than us,” explains Kristie.
“We wanted to do something nice to make a difference, so we decided on some good deeds.”
Every day in June and July, the generous siblings dropped off home baking to strangers, topped up parking meters, slipped Lotto tickets into library books and left coins at vending machines. For each deed they did, they left behind a handwritten note from the “Cystic Sisters”, containing a web address with information on their disease, which affects approximately 500 New Zealanders.
Kristie explains, “We wanted to get people talking about CF because a lot of people don’t know about it.”
Nikki adds, “It’s a hard disease to explain because often people don’t look sick. It’s not like cancer, where people lose their hair.”
For now, the sisters are looking after themselves as best they can and enjoying every day they have with their families. “We just want what every parent in the world wants – to live long enough to see our children grow up,” Nikki smiles.
