Girl was diagnosed with cystic fibrosis as a toddler
Friday, October 25, 2013

Grace Lidgett is full of enthusiasm and always looking to make a new friend. Her bright smile can be seen throughout the neighborhood when she’s playing with her friends and older brothers, Grant and Andrew.

At first glance, you would never know Grace lives with a chronic disease.

For the first six months of Grace’s life, she seemed perfectly healthy. Even when she started showing allergy symptoms and had difficulty growing, her parents, Amy and Tony, didn’t think much of it.

By the time she was 14 months old, however, Grace weighed only 14 pounds. Her pediatrician referred the family to University of Iowa Children’s Hospital to determine what was wrong.

The Lidgetts learned Grace has cystic fibrosis—a genetic disorder that causes her body to produce a lot of thick, sticky mucus that clogs different organs. Grace’s cystic fibrosis mainly affects her lungs and digestive tract, which explained her allergy symptoms and slow growth.

“From the moment she was diagnosed, she had a team of physicians treating her,” says Tony.

A video version of Grace Lidgett's story.Video courtesy of UI Children's Hospital.

Now 8 years old, Grace sees a dietician and specialists in pediatric gastroenterology, otolaryngology, and physical therapy. Grace also sees pediatric pulmonologist Timothy Starner, MD, for her lungs, which are her biggest concern.

Grace takes multiple medications, must complete nebulizer treatments, and finishes airway clearance respiratory therapy twice a day to control her symptoms. She wakes herself up every morning before the rest of her family to complete the treatments on her own.

“We want her to take charge of her disease and keep herself healthy because that’s her best defense in living a long life,” says Amy.

Since Grace’s diagnosis, the Lidgetts have been involved in many cystic fibrosis awareness activities and are members of the UI Children’s Hospital Cystic Fibrosis Family Advisory Board. Grace has also participated in clinical trials in hopes of impacting cystic fibrosis research.

“The research that goes on here gives us really amazing hope, because what they’re finding through this research is benefiting not just Grace but all of the people diagnosed with cystic fibrosis,” says Amy.

The Lidgetts feel at ease when they come to UI Children’s Hospital and are thankful for the doctors and nurses on Grace’s care team.

“We’re going to leave here better than the way we came, so we can’t thank the doctors and staff enough for all they have done for our family,” says Amy. “They are literally adding years to our daughter’s life.”

“One of the things the doctors told me was, ‘You will send your daughter to college. You will walk her down the aisle,’” adds Tony. “Those are my dreams, and they are within reach because of UI Children’s Hospital.”

Grace has some big plans for herself, too. When she grows up, she hopes to be a soccer coach, a ballerina, a dog walker, a babysitter, a pop star, and a pianist.

Grace also has a message for her doctors and nurses: “Thank you for keeping me healthy.”

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