personal fundraiser
Braelyn Schut
A MESSAGE FROM BRAELYN’S PARENTS
Our daughter Braelyn’s story, like so many others, began with the overwhelming joy, hope, and love that every new parent feels. But soon after her birth, we found ourselves on a path we never expected—one filled with uncertainty, unexpected diagnoses, and an evolving understanding of the world around us.
Watch the video above created by Braelyn’s family to learn more about Usher syndrome and Braelyn’s story!
It all started with hearing screenings. Our daughter didn’t pass three of her newborn hearing tests, and while doctors assured us that this was not unusual, we still held on to hope that it was just fluid in her ears. However, as the weeks went on, and after an inconclusive auditory brainstem response (ABR) test, we began to worry. It wasn’t until a follow-up ABR revealed the reality we were dreading: our daughter has bilateral moderate-to-severe sensorineural hearing loss.
The diagnosis was difficult. As parents, we mourned the life we had imagined for her—the world of sounds, music, and words that we dreamed she would experience. Yet, we were also met with the kindness and support of our early intervention team, who gave us guidance and encouragement. One of the providers shared a message that changed everything: “Your daughter is fearfully and wonderfully made. She was placed in your family because you are the parents she needs.” That simple yet profound truth helped us reframe our journey, and we began to see that our daughter, though facing challenges, was also destined for a world full of opportunities.
At five months old, our daughter received her first set of hearing aids. As we adjusted to the new reality, we embraced American Sign Language (ASL) and began learning how to raise her in a bilingual, bimodal environment—supporting both spoken language and sign language. But as we navigated this new world, we sought answers, hoping to understand the cause of her hearing loss more clearly. That’s when we received yet another unexpected diagnosis: Usher syndrome, a rare genetic condition that causes both hearing and progressive vision loss over time. Usher syndrome has shaken our family to its core.
The news of her eventual vision loss was heartbreaking, a new form of grief we had never anticipated. But the deeper we delved into this rare disorder, the more we realized the critical importance of supporting research into Usher syndrome. Through this journey, we’ve found strength in community—connecting with others in the Deaf/Hard of Hearing and Usher syndrome communities, as well as advocates and researchers who are working tirelessly to make a difference. Our daughter is resilient. She is joyful, determined, and endlessly curious.
Every day, we learn from her. Every day, we are reminded that her story is powerful, her voice matters, and her life is beautiful. We are proud of the person she is becoming. We are in awe of her courage. And we know that with continued support and investment in Usher syndrome research, we can create a brighter future for her and others like her.
2026 Grand Rapids Open: Golf for a Cure
15th Annual golf outing
The GR Open Golf Fundraiser brought together 144 golfers and 16 generous sponsors for a memorable day of golf, community, and purpose, all in support of families affected by Usher Syndrome. Through the incredible support of participants, sponsors, donors, and volunteers, the event helped raise awareness and funds to further the mission of the Usher Syndrome Society.
For our family, this cause is deeply personal. Our daughter, Braelyn, was diagnosed with Usher Syndrome, and our journey has introduced us to a community marked by resilience, hope, and determination. The overwhelming support shown at this event was a powerful reminder that families facing Usher Syndrome are not walking this road alone.
The success of the GR Open reflects the compassion and generosity of a community committed to making a difference. Funds raised through the event will help support research, advocacy, family resources, and programs that bring hope to those living with Usher Syndrome.
We extend our heartfelt gratitude to all 144 golfers, our 16 sponsors, volunteers, donors, and supporters who made this day possible. Together, we are helping to create a brighter future for individuals and families affected by Usher Syndrome.
Thank you for standing with the Usher Syndrome community and helping drive hope forward
Every contribution—no matter the size—has the power to make a difference. Whether through a financial donation, spreading awareness, or simply sharing our story, you are helping create hope for Braelyn and those that are facing similar challenges.
From the bottom of our hearts, we thank you for your love, generosity, and support. Together, we can build a brighter future for Braelyn and so many others. Thank you for taking the time to hear our story and getting to know Braelyn!