Cystic Fibrosis hits home
When Meagan Johnson of rural Audubon was pregnant with her second child, there was nothing but joy.
“My pregnancy was normal, the delivery was normal … everything seemed great,” she said.
But about a month into her daughter, Ciara’s tiny life, Johnson and her husband got a call about the results of the standard newborn screening little Ciara had gotten before she left the hospital.
“They told us she had tested positive for cystic fibrosis,” said Johnson, who at that time, didn’t have a clear understanding of what that was.
“I googled it right away and started reading some things that were … very hard to read, very hard to swallow,” said Johnson.
What she learned was that cystic fibrosis is a genetic disease that can only be generated when both parents are carrying the mutated gene for it, and even then, there is still only a 25 percent chance the baby will get it.
Little Ciara was at the losing ends of those odds.
Having the disease means her glands that produce mucus and sweat are producing large amounts of sticky mucus that builds up around her organs, particularly her lungs.
That mucus build-up can be a breeding ground for bacteria, leading to infections.
It also prevents some digestive enzymes from reaching her intestines, which are needed to digest her food.
Having cystic fibrosis puts Ciara at risk for a number of other complications, one of which is a shorter life expectancy.
Currently those with cystic fibrosis generally live to be in their mid-thirties, as the disease progresses and spreads to other vital organs.
“But 60 years ago their life expectancy was only 5, so there have been such huge strides in research,” said Johnson, who has come a long way in the seven months cystic fibrosis has been a part of her life.
“When we first learned about the diagnoses, I was kind of a wreck and it’s been very hard for my husband to accept,” she said. “But it doesn’t get you anywhere to cry all the time, and now we just do what we need to do to get by on a daily basis.”
That includes staying on top of different kinds of medication Ciara takes, giving her nebulizer treatments twice a day and doing chest and back pounds to loosen up the mucus so she can cough it out.
The happy-hearted little girl doesn’t like her treatments, but they sure don’t seem to be slowing her down either.
“She’s already walking around furniture and trying to steal her brother’s Hot Wheel,” laughed Johnson, who says by looking at Ciara, nobody would ever know the seriousness of what is going on inside her tiny body.
But as the Johnsons fight the daily battles that come with a condition like this, they’re also choosing to bring that fight to the front lines.
Johnson says they will be doing what they can to bring awareness to the community about cystic fibrosis because it’s still one of those diseases that few people really know about.
“I would love to try to get our community educated and familiar with this so that she doesn’t have to do it as she’s growing up,” said Johnson, who is also determined to do what she can for the foundation that is researching cystic fibrosis.
“They say they are close to finding a cure for this … that they’re close to turning ‘CF’ into ‘Cure Found,’” said Johnson, who is participating in a run for cystic fibrosis in Fargo next month.
The event is set to take place at Lindenwood Park on May 4 at 9 a.m., although officials are talking about the possibility of holding it elsewhere due to flood concerns.
For more information on the event log on to www.cff.org/chapters/minnesota/greatstrides.