The Schutz family — Erich, Lexie, and their two young children, Wally and Winnie — are navigating life with Fragile X syndrome with a blend of resilience, hope, and a profound commitment to one another. Their journey highlights both the joys and challenges of raising a child with Fragile X, and their story reflects the strength that research and community can bring to families like theirs.
A Bond Like No Other and a Life-Changing Diagnosis
Five-year-old Wally, who recently began kindergarten, is incredibly gentle and caring, especially with his younger sister, three-year-old Winnie. From an early age, Winnie has been Wally’s protector and biggest cheerleader, often explaining to others, “Wally may not understand, but that’s OK.” She lovingly calls him “my brother,” and, together, they share an inseparable sibling bond — though Wally keeps his iPad firmly to himself!
The family learned of Wally’s Fragile X diagnosis in July 2022, following milestone delays that led to testing. “In that moment,” Lexie recalls, “we doubled down on giving Wally the best life possible.” As parents, Erich and Lexie resolved to carry on with strength, support, and love for each other and their children, determined to make every day count for Wally and Winnie.
The Impact of Clinical Research
Participating in research has profoundly impacted the Schutz family, especially since Wally completed a clinical trial sponsored by Zynerba Pharmaceuticals for Zygel, a cannabidiol (CBD) topical treatment, and then began using it in an open-label extension. "This treatment has changed Wally’s life,” shares Lexie. Within weeks, his eye contact increased, his anxiety lessened, and his verbal communication blossomed. The family is grateful for the role that cannabis-based therapy has played in Wally’s developmental growth and success.
As a result, their family dynamic transformed, fostering greater calm and connection. “We’re now able to enjoy life in the moment, no longer bracing for the next outburst or tension.”
Small Steps, Big Dreams
Transitioning Wally to kindergarten was a major step, and he embraced it like a champ. From saying “bus” and “friends” as he heads off each day to handling the longer school hours, Wally has been nothing short of resilient. His success in this new environment gives his family hope for the future and serves as a reminder of his remarkable strength.
Looking ahead, Erich and Lexie hope for a world where Fragile X research can continue to advance and make life better for families like theirs. “We want Wally to be able to communicate his needs, form meaningful relationships, and live independently, in whatever form that takes,” Lexie shares. The family believes in FRAXA’s vital role in helping to turn these dreams into reality, hoping for breakthroughs that can “unleash Wally’s full potential.”
A Message to Families and Supporters
For families just starting their Fragile X journey, the Schutz family encourages taking things one step at a time. “It’s OK to feel overwhelmed. Take care of yourselves, because you can’t pour from an empty cup,” they advise.
To those considering supporting FRAXA, Erich and Lexie emphasize that “we’re on the brink of huge breakthroughs.” Every donation to FRAXA fuels research that brings us closer to answers for families like theirs and offers hope for a future free from Fragile X.
Donate in honor of the Schutz Family
The Schutz family’s journey embodies resilience and the power of research. FRAXA is grateful to be part of their story and to help build a brighter future for Wally, Winnie, and countless others.