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
Join Us in Changing the Future
In 2023, our daughter Braelyn was diagnosed with Usher Syndrome, the leading genetic cause of combined deafness and blindness. Since then, we have been on a mission to raise awareness & finances to advance medical research towards a cure before her vision is taken from her. This event helps us achieve that goal, with 100% of proceeds applied directly to cutting edge medical research through Usher Syndrome Society.
Last year we raised over $24,000. With your help, we’re going even bigger in 2026! Thank you for your support – let’s change the future together for Braelyn & thousands of others just like her! Scan the QR code to hear Braelyn’s story, learn more and/or donate directly.
What: 4 person golf scramble
Register by emailing your 4-person team & contact info to [email protected]
Registration limited to first 144 golfers
Like the “Grand Rapids Open” Facebook Page to stay informed
When: Saturday, June 6th, 2026
8:30am shotgun start
Where: Gleneagle Golf Club
6150 14th Ave, Hudsonville
Cost: $115/player or $460/team (prepaid to Nicole by 5/23/26)
Venmo @NicoleSchut (last 4 digits are #9081) or email Cody at [email protected]
Contests: Longest Drive, Straightest Drive, Longest Putt, Closest-to-pin (2), Blind Chip Contest, Par 3 Challenge, Skins, Raffle, & More!
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!