Lilly’s Story

Lilly Mullen is a bright and joyful six-year-old from Liverpool. From the very beginning, her journey has been one of strength, love, and perseverance.

Lilly was diagnosed with Moebius Syndrome at birth. When she was three months old, doctors confirmed the diagnosis through an MRI scan. For her family, the news was overwhelming at first. Sophie remembers feeling shocked and deeply upset, and it took time to process what the diagnosis would mean for Lilly’s future. Like many parents, she had to learn, adapt, and grow alongside her child.

From an early age, Lilly has faced more challenges than most children her age. She has frequent hospital appointments and has struggled with eating, sleeping, drinking, and walking. She has also undergone several surgeries. None of it has been easy, but Lilly continues to move forward with determination, supported every step of the way by her family.

Despite the medical challenges, Lilly’s personality shines through in everything she does. She goes to school and loves to dance and sing — activities that bring her confidence and joy. Music and movement are a big part of her world, and when she’s singing, it’s easy to see how happy she feels.

What makes Lilly happiest is being with her family. Singing together, spending time close to the people she loves, and feeling supported are what matter most to her.

Like many children with Moebius Syndrome, communication can be frustrating at times. Lilly sometimes feels sad when people don’t understand her when she’s talking. Those moments are hard, but her family continues to encourage her, helping her find her voice in her own way and at her own pace.

Sophie describes Lilly as one of the most amazing people she knows — someone who inspires her family and everyone around her every single day. Her message is simple and full of love: she wouldn’t change Lilly for the world.

Lilly truly is one in a million.