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Kodee & Kacee's Story: Living With Cystic Fibrosis

By Kylie Bearse
Published On: May 10 2013 04:00:10 PM CDT
Updated On: May 22 2013 03:41:13 PM CDT

Two Young Sisters Battle Cystic Fibrosis

SALT LAKE CITY, Utah -

Most everyone wants to avoid a cold or the flu; but for two young sisters, even the smallest cold could land them in the hospital.

Every toy in Kodee Nielsen's hospital room is pristine, germ free. They have to be.

"It's hard for Kodee to see other kids go out and run around and play," said Kodee's mom, Audra.

Kodee has cystic fibrosis (CF), a genetic disease affecting her lungs and digestion.

"We found out with Kodee when she was 8 months old," said Nielsen. "It was a total shock for us because we didn't know it ran in our family."

About 30,000 people in the United States have CF. Kodee and little sister Kacee are two of them.

"It was hard at first," said Nielsen. "There were times, when she was first diagnosed, I didn't want to put her down."

Like a lot of moms, Nielsen turned to Google for some answers.

"They say it's the worst thing you can do. It just had me so scared," said Nielsen. "The average age for their life span is about 37 years-old right now. She was my baby and I just kept thinking, I'm gonna live longer than she does.

Specialists at Primary Children's Medical Center helped ease those fears.

"They made us feel so much better," said Nielsen. "That they're coming up with so many advances, because they were diagnosed early we're able to start them on treatments early."

Even with those advancements, Kodee and Kacee still need to be in the hospital every few months for treatment.

"every times they get just the sniffles or something we've got to get them in to see the doctor," said Nielsen.

Not counting trips to the doctor, medicine for the girls costs $14,000 a month. By the time they're 18 years-old, they will have spent more than $3 million just on medicine.

"We've had to get on Medicaid just to afford it," said Nielsen.

Not to mention the emotional costs. Kodee will bravely show you where she got multiple shots in her arm.

"I want my kids to have as normal life as possible," said Nielsen.

May also happens to be Cystic Fibrosis awareness month.

While only 30,000 people in the U.S. have C.F., more than 10 million people are symptomless carriers. Both mom and dad must have that gene to pass it on.

For more information visit http://www.cff.org/

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