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Marysville girl, 5, battles lung disease; walk July 12 to raise money
MARYSVILLE – Like many 5-year-olds, Kaidynce Olsen likes to jump on the couch, stand on her head and have her sister chase her around the kitchen table.
But she doesn’t like being hooked up to a nebulizer for an hour every day, being stuck in Children’s Hospital for up to two weeks at a time or having a throat culture with “a GINORMOUS Q-tip,” she said, motioning with her hands a length of about two feet.
“It’s traumatic for her,” said her mom, Cortney. “They have to hold her down,” but afterward Kaidynce likes that she gets a popsicle.
Kaidynce was born with life-threatening cystic fibrosis so those are all things she’s learned to deal with, along with her parents, Cortney and John, and 8-year-old sister Ryleigh.
The family takes part in the annual Great Strides walk to raise money to try to find a cure for the disease. This year’s walk will take place July 12 starting at the Tulalip Amphitheatre. It is one of 600 such walks across the nation.
People with the genetic disease have problems with their lungs and digestive system. Progress has been made with treatment so that now people live into their 30s and 40s.
Kaidynce used to be lethargic much of the time. But since she started taking the drug Tobramycin in the fall there has been great improvement.
“It’s such a difference. She’s like a whole different kid,” Cortney said.
Kaidynce is excited about playing soccer, where in the past she wasn’t because she couldn’t keep up with the other kids. She’s also going to be taking swim lessons.
She also is happy about starting kindergarten in the fall, but her mom is concerned. Kaidynce did pretty well in preschool, but it wasn’t all day.
Kaidynce won't have to use her nebulizer at school because she is hooked up to it in the morning and at night for a half-hour each time. It helps break up the mucus in her lungs. A saline solution helps with that, but she still coughs often to clear her throat.
But at school Kaidynce will have to take a bunch of pills, she will have to go to the bathroom often, and she’s small for her age, weighing less than 40 pounds. She really hasn’t gained much weight in two years, her mom said.
"I'm worried she'll get picked on," said Cortney, a stay-at-home mom. John works for Boeing.
The mom also is concerned about kindergarten because she knows how kids get each other sick. Even a cold can knock Kaidynce down for days.
“She’ll lay on the couch all day when she’s sick,” Cortney said. “She loves the outdoors. Loves to play and go. But when she’s sick it wears her out.”
Kaidynce loves to play so much there’s a rule in the house that her third-grade sister can’t play outside until Kaidynce is done with her treatment.
“It’s not fair,” Kaidynce said.
Cystic Fibrosis is genetic, but a distant cousin, now 26, is the only other family member who has it, Cortney said. So when the couple found out Kaidynce had it at birth they were nervous because they didn't know much about the disease.
“They told us, ‘Do not read the internet, it will scare you,'” said Cortney, now a CF volunteer. ”I did not want to go through that every day.”
Doctors didn't tell them everything about the disease. They had to research to get their own information.
“So many things can happen to kids. You have to learn as you go. They don’t tell you everything because why worry unless they get it,” the mom said.
The scariest time was when Kaidynce was about a year old, and she was put on oxygen in the intensive care unit. Nurses had to check on her every 10 minutes.
“It was new to us. We didn’t know she would be in for two weeks, and we’d need to find someone to take of Ryleigh. We’ve actually spent two Christmases in the hospital,” Cortney said.
Part of the disease involves the pancreas. It does not absorb nutrients well so it is hard for patients to gain wait. Kaidynce takes six enzymes every meal to try to help that process. As a result, her parents are always trying to get her to snack so she can get extra calories. When she was a baby, they actually added salt to her bottles.
“Bad food doesn’t affect her like everybody else,” Cortney said.
As for the walk, it started about six years ago, and around 350 people participated last year. The Olsens started walking four years ago and their Team Kaidynce is made up of mostly family and friends.
“We try not to dwell on the future. We live day to day. She could develop problems later in life. We just have to watch her closely,” Cortney said.
Cystic Fibrosis Foundation Walk
What: Great Strides, Walk today adds tomorrows
When: 9 a.m. Saturday July 12
Where: Tulalip Amphitheatre
Cost: Registration is free; go online at www.eff.org/greatstrides
Highlights: Family friendly event includes a 3-mile, flat course. There will be a raffle for prizes, kids games, crafts, live band, and a free lunch from Famous Dave's Bar-B-Que for those who pre-register.
The actual walk starts at 10 and prizes are available. If you bring in $100 you get a t-shirt, for example. If you bring in $10,000 you get a 40-inch HDTV and a Dyson vacuum cleaner. And there are prizes in between, such as an espresso maker, tablet, camera, etc.