Children's Miracle Network Meet Our Children's Miracle Network Champion

Kylea, Our Children’s Miracle Network Champion

Your support for the Children’s Miracle Network made high-quality healthcare possible for Kylea, and thousands of children like her.

Kylea was born prematurely at 34 weeks, five days, and just 3 pounds, 11.5 ounces. It was 2008, and Kansas, where she was born, had just adopted universal newborn screening for cystic fibrosis (CF). Kylea tested positive for CF, but her medical team thought it was a false positive since she had no symptoms. An overachiever from birth, Kylea went home from the NICU after only 13 days. 

Two months later a sweat test left the family no closer to confirming a CF diagnosis because Kylea was still under 5 pounds and too small to sweat. A few weeks later, mom Reba decided something was off. This time she took Kylea to the emergency center at a nearby children’s hospital in Missouri where Kylea was admitted for jaundice.

After a liver biopsy and other tests, including blood tests to look for the genetic mutations that cause CF, the family got confirmation: Kylea had two copies of delta F508, the most common genetic mutation that causes cystic fibrosis.

With a proper diagnosis, Kylea began receiving the right care to manage her condition. Then in 2016, mom Reba noticed that Texas Children’s Hospital ranked #1 in pulmonology. Kylea was getting excellent care where they were, but with a complex and progressive disease like CF, Reba wanted more for her daughter. The family moved to Houston in 2017, just in time for the new school year.

At first Kylea only had appointments in Texas Children’s CF clinic. Like other children with cystic fibrosis, Kylea has gradually needed a full range of services to manage her many complications, including endocrinology for CF-related diabetes, psychiatry, gynecology, physical therapy, cardiology, otorhinolaryngology, immunology, and audiology.

Thanks to the holistic approach of Texas Children’s, Kylea’s childhood was filled with t-ball, dance, gymnastics, Girl Scouts, swimming, zoo and science camps. Today at 15, she is studying French and hopes to travel the world and study forensic psychology in college.

Most of all, Kylea is grateful for the care she has received at Texas Children’s Hospital. As our 2024 Children’s Miracle Network Champion, she wants all kids to have access to the same quality of care so they too can fill their childhoods with activities and live their dreams.