Harper Wing

Meet Harper Wing

Harper Wing is a bright, determined 12-year-old from Maine whose journey with Moebius Syndrome has been marked by resilience, courage, and joy.

The Diagnosis

Before Harper was born, doctors knew he would need correction for bilateral club feet. At birth, his pediatrician noticed differences in his right arm and hand and initially suspected Poland Syndrome. It was Harper’s older brother who first realized something more might be going on — Harper didn’t blink, and his face showed little reflexive movement. A referral to a geneticist raised the possibility of Moebius Syndrome, and soon after, specialists in Boston confirmed the diagnosis. For his family, those early days were overwhelming and filled with uncertainty. They had never heard of Moebius Syndrome before, and resources were scarce. But finding the Moebius Syndrome community gave them guidance, hope, and a sense of belonging that made all the difference.

Challenges & Triumphs

Harper has faced countless appointments, surgeries, and setbacks — some with serious complications. Yet his perseverance shines through every obstacle. He dives into new experiences like karate, skiing, golf, and band, all while excelling in school. His determination and willingness to try are constant reminders of his extraordinary spirit. “He is an extraordinary ordinary person who perseveres despite every obstacle,” his family shares. “We couldn’t be more proud.”

Everyday Life

Harper loves school, his friends, and recess days spent playing Gaga ball. After school, he enjoys art club and karate, and at home he treasures time with his brothers. Whether gaming, swimming, or just hanging out, Harper fills his days with fun, creativity, and connection.

What Brings Harper Joy

Family is at the heart of Harper’s happiness. He loves camping trips, telling stories by the fire, biking, and playing outside. Building Lego creations and enjoying his favorite foods (especially sweets!) bring him joy too. Watching old family videos always sparks his infectious laugh — and chats with his cousin Way Way are guaranteed to make him smile.

The Hard Moments

Medical appointments and surgeries remain tough for Harper, especially after difficult past experiences. Anxiety and fear sometimes creep in, but Harper meets them with courage. He reminds himself: I am strong. I can get through anything. And time after time, he does.

A Message to Others

Harper’s family has an important message for others walking this path:

“Take time to enjoy the moments and milestones. It won’t be a linear path and that’s okay — it is their path. Celebrate every success, no matter how small. Lean on others. Ask questions. Become your child’s advocate. And connect with the Moebius community. Conferences and community connections are invaluable — they remind us that we are not alone.”

A Special Note

In 2023, Harper underwent smile surgery. Though it came with challenges, the result was life-changing — a smile he and his family had waited a decade to see. But with this new ability came unexpected feelings of identity: Harper shared with his therapist that he wasn’t sure who he was anymore, now that he could smile.

His family reflected deeply on that moment: Harper is not defined by one feature, one surgery, or one diagnosis. He is loved for exactly who he is — for his strength, his heart, and his unique journey. “He is simply amazing because of and in spite of his differences. And he will continue to move mountains.”

The Voice of the Moebius Syndrome Community – mfoms.org