Mimosa 4 Fibrosis fundraiser is Saturday
Meagan Johnson didn’t have a reason in the world to know what Cystic Fibrosis was until 18 months ago.
“I don’t recall even hearing about it,” she said.
But when her daughter, Ciara, was born, it took only until her newborn’s first screening to learn.
“The screening test came back and one of them indicated she may have Cystic Fibrosis,” said Johnson, who upon learning more about the disease, was “shocked and scared.”
“I found out the life expectancy is only in the mid-30s, and that’s the age I am now,” she said, adding that she just kept hoping further test results would reveal a false positive. But they didn’t.
“They came back positive again,” said Johnson, who already had an older child, Cyles, with her husband, Cody.
For the Johnson family, life would instantly change as they rallied around their little girl in an attempt to keep her healthy. For people with Cystic Fibrosis, the body produces a large amount of thick, sticky mucus that gathers around the organs such as the pancreas, liver and lungs. It is life-threatening and there is no cure.
For Ciara, her little body wouldn’t absorb any of the nutrients in her food, and even at 2 months old, she was still only eight pounds.
“She was starting to lose hair, and although she was eating a lot, on the inside she was actually starving,” said Johnson, who upon hearing the diagnoses of Cystic Fibrosis, immediately started her daughter on enzymes to help her body absorb nutrients. It worked.
“She started gaining weight right away until she caught up,” she said, adding that she even has a little “extra cushion” to work with now.
Little Ciara is also on medication for her liver, has nebulizer treatments and wears a $16,000 compression vest designed to vibrate and shake the mucus from her lungs so that she can cough it up.
Catching illnesses can be extremely dangerous for Ciara, particularly respiratory illnesses that may require more lung function. That fact has the Johnsons sometimes living in what Meagan calls “a bubble.”
“I feel bad, but if we know somebody is sick, we can’t let them into our house or if we know there’s somebody sick at our son’s daycare, we keep him home instead of risking him bringing something home,” she said, adding that extended family has also learned to step up their awareness around Ciara.
“The little cousins all know to wash their hands and things like that,” said Johnson, whose mother-in-law, Tammy Odegaard, is doing more than just washing her hands. She’s rolling up her sleeves and coordinating a fundraiser designed to raise money for the Cystic Fibrosis Foundation.
Mimosa 4 Fibrosis
The first ever Mimosa 4 Fibrosis is happening Saturday, Feb. 22, at Randy’s on Lake Eunice.
The event starts at 11 a.m. with a whist tournament, some mimosas and a chili feed.
“We’re having door prizes and prizes for the tournament,” said Odegaard, who says she’s proud of how their whole family has rallied around Ciara to help battle the disease that plagues her little body.
“Last year we all walked in the Great Strides Walk in Fargo for Cystic Fibrosis,” she said, adding that they then all wanted to figure out a way to raise money and have fun at the same time. “And we have quite a few of us who play whist, so we thought, hey, let’s try it.”
She said this is the first time anybody in their family has been diagnosed with such a serious illness like Cystic Fibrosis, and everybody is determined to help them through it.
The Cystic Fibrosis Foundation is, in their opinion, the best way to do that, as research is paramount.
“There are no government dollars going into this research – it’s all funds that are raised from families and friends of people with Cystic Fibrosis,” said Johnson. “That’s why it’s so important for us to do something.”
Johnson says although it does still scare her to think of the life expectancy of her little girl, she also knows what the life expectancy for Cystic Fibrosis was years ago.
“In the ’50s it was like 5 or 6 year old, and so they’ve made such huge strides, researching everything from the cellular level to treatments that help their symptoms now,” said Johnson, who says it’s out of the ordinary for her family to hold a fundraiser for something.
“There are so many causes out there to raise money for, and we know that, but this one wouldn’t survive without family and friends to raise the money – there would be no research,” said Johnson, adding that it’s sometimes tough to get people in the community to understand just how serious Ciara’s condition is because she looks so healthy.
“You would never know by looking at her how serious it is,” said Johnson, “but I think more and more we talk to people about it and they get to know us, they’re starting to see how much goes into keeping her healthy.”
For more information on Mimosa 4 Fibrosis, call Tammy Odegaard at 849-3404 or Rafty at 701-306-6555.