With February 28 marking Rare Disease Day, we honor the courage, joy, and resilience of families living with Schaaf-Yang Syndrome (SYS). It’s a day to raise awareness, celebrate progress, and highlight the critical need for research and support for children and families affected by rare genetic conditions.
Eric and Lisa cherish the lessons Eira has taught them. “She brings an innocence to complexities that most people take for granted… Her smiles, her happiness, her patience, and her kindness are all real and unfiltered,” Eric shares.
Eira recently learned to scroll on her AAC device, giving her new ways to communicate and connect. She’s exploring her environment more independently, crawling through the house and even sitting at the kitchen table on her own. Her favorite things include music, especially Super Simple Songs and Taylor Swift, books, trains, cars, and the sound of the letter “X,” which always brings her joy.
The Gaults believe research and collaboration are essential for improving care for Eira and other children with SYS. “Our hope,” Eric says, “is for Eira to live a positive, joyful life full of love, happiness, and meaningful experiences every day… to be cared for, included, and valued exactly as she is.”
Xzavier has made incredible progress with head control and sitting up straight, while Coralynn is learning to show her emotions, especially her smile when she sees loved ones. Both children love lights, music, and Sesame Street, and their parents hope they continue to grow as their happy, lovable selves, with dreams of standing and walking one day.
As we advocate for those affected by rare disease, let’s hold onto the belief that we can make a difference. Rare is hopeful, inspiring, unlimited—and so much more. Together, let's celebrate every extraordinary individual in our community.
Celebrate Rare with us with our Rare Disease Day Toolkit. Discover simple ways to:
✅ Raise awareness
✅ Share your story
✅ Make an impact
Together, we inspire hope, amplify voices, and work toward a future where every individual—regardless of diagnosis—is recognized for the extraordinary qualities that make them uniquely beautiful.