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Published April 30, 2013, 11:35 PM

Audubon woman learning to live with infant daughter’s cystic fibrosis diagnosis

AUDUBON, Minn. – Meagan Johnson of Audubon, Minn., found out through a newborn screening that her daughter, Ciara, has cystic fibrosis.

By: Tracy Frank, INFORUM

AUDUBON, Minn. – Meagan Johnson of Audubon, Minn., found out through a newborn screening that her daughter, Ciara, has cystic fibrosis.

While it’s been difficult for her to come to terms with the diagnosis, she’s working to raise money for the Cystic Fibrosis Foundation to help her 8-month-old daughter by participating in the May 4 Great Strides Walk.

Her team, Crusading for Ciara, has surpassed its goal of raising $5,000.

“It reassures us that there’s hope out there,” Johnson said. “It brings us together with a community. We’re still learning about CF (cystic fibrosis) day by day as we go along.”

Cystic fibrosis is a life-threatening inherited disease that affects the lungs and digestive system of about 30,000 children and adults in the U.S., according to the Cystic Fibrosis Foundation. People with the disease produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections. It also obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.

Johnson said it was overwhelming when she first found out her daughter had the disease.

“Probably every single emotion possible hit,” she said. “I just kept thinking it wasn’t possible for her to have it because we’d never heard about it before from any family.”

Ciara has to take special vitamins and has to be on predigested infant formula, which is easier for her body to absorb. She also has to use a nebulizer twice a day, and her parents have to pound on her back and chest around her lungs to break off the sticky mucous, Johnson said.

Around age 2, Ciara will require a specialized vest to help dislodge the mucous. The vest costs around $16,000.

“It’s pretty tough,” Johnson said. “They’ve come along way with medicine and with the therapy for cystic fibrosis, but when you’re talking about your child and they have a limited life expectancy, that’s never what you want to hear or see.”

In the 1950s, few children with cystic fibrosis lived to attend elementary school, but now many people with the disease can expect to live into their 30s or beyond, according to the foundation.

Johnson said it makes her feel really good to see how the community has come together for her daughter in their fundraising efforts, but it also makes her sad that they have to do this for her.

“It’s nice to know that you’re not alone, but it’s a tough disease that all these children are facing,” she said.

Readers can reach Forum reporter Tracy Frank at (701) 241-5526

If you go

What: Great Strides Walk for the Cystic Fibrosis Foundation to fund research, care, and education programs

Where: Rabanus Park, 4315 18th Ave. SW Fargo

When: 10 a.m. Saturday (registration is at 9 a.m.)

Online: www.cff.org