Cystic Fibrosis: Avianna's Story

 


A pregnancy comes with all sorts of feelings, hopes and dreams for a mom-to-be. But mostly, a parent wishes for good health for their child.

For Stacy of De Pere, she had a normal, full-term pregnancy with her middle child, Avianna. Avianna’s birth went as planned and it wasn’t until after Avianna’s newborn screening when Stacy learned her daughter had cystic fibrosis: a chronic and progressive genetic disease of the body’s mucus glands that affects the respiratory and digestive systems.

“We don’t have any family history of cystic fibrosis,” recalled Stacy. “It was a big shock when the test came back positive.”

The family took Avianna to HSHS St. Vincent Children’s Hospital where she underwent a sweat test to verify the cystic fibrosis diagnosis and was scheduled to meet with Dr. Peter Holzwarth, a pediatric physician through Prevea Health, specialized in the care of children with cystic fibrosis.

“We met with the doctor who walked us through what life would be like, the different challenges we would face and the different medications she would need,” said Stacy.

Avianna’s first hospitalization came when she was just one year old.

“Avianna was quite sick the first few years of her life and we were in and out of the hospital a lot, but having HSHS St. Vincent Children’s Hospital just minutes down the road was a blessing,” said Stacy. “It’s just a thousand times better to be close to home, only 15 minutes from the hospital.”

Cystic fibrosis is something Avianna will always have. She takes at least 45 pills a day and has a port and feeding tube to ensure she is receiving proper nutrients. Whenever Avianna returns to HSHS St. Vincent Children’s Hospital – whether she is critically ill, needing a checkup or if her port needs to be flushed – it is always a homecoming of sorts – the team knows Avianna; and she knows them.

“Over the last several years we’ve gotten to know all of the nurses and staff,” said Stacy. “Child Life is always waiting for her – they know what toy she loves to play with and as soon as we get there, Child Life has all of those things ready for her in her room.”

Today, Avianna is a very active, happy and energetic 8 year old. Not only does she participate in gymnastics weekly which helps to open her airways, she also participates in beauty pageants which has helped her become more outgoing.

“She’s very positive about everything. She knows she has cystic fibrosis and she knows what it is,” said Stacy. “And while her lung function could be better, it’s decent.”

When Avianna is not feeling well, she requires a lot of resting to regain the energy she lost from coughing the day and night before. Avianna’s positive attitude is what keeps her going.

“When she was younger, she was sick quite a bit. Both me and her dad were nervous to see what her future might hold,” said Stacy. “But as she’s gotten older, and stayed healthier, we’re very proud of the fact that she’s still going out there and doing great things.”

As the only children’s hospital in Green Bay, HSHS St. Vincent Children’s Hospital is committed to the exceptional care of children, like Avianna, and to the fight against the childhood illnesses and injuries.  As part of a nonprofit, Catholic-based health care system, HSHS St. Vincent Children’s Hospital provides care to all who need it – regardless of their ability to pay.  You can help. Join the Fight and donate today to a community fundraising campaign that will allow HSHS St. Vincent Children’s Hospital to upgrade its facilities and expand spaces specifically designed for children.

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