Meet Miley, a joyful four-year-old who is rewriting the narrative of what it means to live with Full Edwards Syndrome (Trisomy 18). Miley joined our family through adoption when she was just 2.5 years old, and from that moment on, she has filled our lives with light, laughter, and resilience.

Due to her complex medical needs, Miley faces some unique challenges. She has Pulmonary Hypertension, is oxygen-dependent, and is past the safe window for surgical repair of her ventricular septal defect (VSD). Despite this, Miley continues to thrive, defying medical expectations at every turn. While common viruses often result in hospital stays, her strength shines through as she bounces back stronger each time, leaving her care team amazed.

Miley is surrounded by a wonderful pediatric intensive care unit (PICU) team that knows her well and supports our family’s decisions 100%. Hospice services also follow her journey, helping us focus on giving her the best quality of life—on her own terms.

Outside of medical care, Miley is an active and happy little girl. She participates in physical, occupational, and aquatic therapy and attends home-based preschool. She’s incredibly close to sitting independently and has even started taking steps with the help of her gait trainer! Her favorite things include balloons, Disney Junior, and any toy that makes noise. But Miley’s best feature? Without a doubt, it’s her radiant smile and infectious giggle, which spreads joy to everyone she meets.

While every day brings its challenges, Miley continues to live life with joy and perseverance, showing the world that a diagnosis doesn’t define her. With the support of a loving family and an incredible medical team, Miley is writing her own story—one filled with love, laughter, and hope.