Meet Lililth Fedor

Lilly Fedor was born brave.

Every morning Lilly’s day begins at 6:20 a.m. as she puts on her vest to begin a 30-minute pulmonary treatment. Her vest vigorously shakes loose the mucus building in her lungs. When she arrives at school, she completes another treatment with her positive expiratory pressure (PEP) device, followed by another vest treatment in the evening and inhaled medications before she goes to bed.

It’s a long day for this 9-year-old who bravely battles cystic fibrosis day in and day out.

At birth Lilly was diagnosed with cystic fibrosis, a genetic disease that causes thick mucus to form in her lungs making it difficult to breathe without her daily treatment. Thanks to donors like you, she receives life-saving care from the Arkansas Children’s pulmonary team.

“We've been very lucky to have a wonderful care team at Arkansas Children’s,” says Lilly’s grandmother Heather. “Dr. John Carroll and his staff have been with us since diagnosis. They are always patient and understanding and never seem to mind the thousands of questions we have asked along the way.”

Now in the 4th Grade, Lilly understands and manages her daily care routine. From the level of treatment settings to the types of medications she needs, Lilly understands how cystic fibrosis affects her and the steps she must take in order to stay well.

Over the years, Lilly has needed Arkansas Children’s Hospital for overnight stays for 10 days or more at a time. During the days when she can't leave her room, Lilly enjoys music therpy and visits from the therapy dogs. She loves the Child Life specialists and the daily surprises they bring while she’s receiving treatment.

“Lilly understands that cystic fibrosis is a part of her, not something that has happened to her,” says her mom Jade. “She doesn’t let it limit her in what she does. She has a very positive outlook on life and loves to do everything her friends do.”

Lilly loves to sing, dance and participate in gymnastics. She was also a part of her first play last December “A Charlie Brown Christmas,” with the Young Players Royal Theater in Benton.

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