Meet Our Champions

During pregnancy, scans revealed baby Lily had Tetralogy of Fallot, a complex heart defect, and other complications, including Pentalogy of Cantrell. Her parents turned to the expert fetal heart and maternal-fetal care teams at SSM Health Cardinal Glennon Children’s Hospital, who guided them through every step. Born at 38 weeks, Lily surprised everyone by doing better than expected, spending just one week in the neonatal intensive care unit (NICU). At four months, she underwent open-heart surgery, bravely recovering in time for her first Valentine’s Day. Months later, complications from a diaphragmatic hernia required emergency surgery and a feeding tube. For much of her first year, feeding was difficult, with repeated hospital stays. Gradually, Lily grew stronger. At 18 months, she no longer needed her feeding tube, just as a rainbow appeared outside her family’s window. Now a bright, joyful seven-year-old, Lily loves reading, scootering, and anything with cheese. Lilly’s diagnosis wasn’t discovered until after birth, when doctors noticed signs like a larger head circumference and trident-shaped fingers. She was diagnosed with achondroplasia, a bone growth disorder that causes dwarfism. At just four months old, she underwent emergency brain surgery to place a shunt, the first of many medical interventions. Since then, she’s had multiple surgeries to address a narrowed foramen magnum, and her care team also manages her frequent nausea, vomiting, and dangerously low blood sugar with a continuous glucose monitor. Lilly has faced eight surgeries, 15 MRIs, and seven sleep studies. Despite it all, she continues to thrive, an energetic, joyful child whose resilience inspires everyone around her. Today, six-year-old Lilly loves art, soccer, basketball, and hip-hop dance. Social and full of energy, she’s already made many friends since starting kindergarten.