Resilience, Hope, and Olivia’s Future
By Sonja Mitchell
Olivia is an independent 17-year-old young lady who enjoys her alone time and loves animals, quilting, cooking, and being outdoors. She is incredibly resilient and has never allowed her hearing or vision challenges to slow her down.
Our journey with hearing loss began when Olivia was very young, but her story has been anything but typical. She actually passed her newborn hearing screening. At 14 months old, she was diagnosed with mild-to-moderate hearing loss, which progressed to severe hearing loss by her second birthday. Despite the severity of her hearing loss, Olivia did not experience the balance difficulties that are associated with Usher syndrome.
For many years, we knew very little about Usher syndrome. We focused on helping Olivia navigate her hearing loss and watching her grow into the strong, independent young woman she is today. We never imagined that another diagnosis was waiting for us.
In December 2025, macular edema was discovered during a routine eye examination. We were referred to a retinal specialist, and that appointment changed everything. It was there that we learned Olivia had Usher syndrome type 1F.
The day we received her diagnosis was absolutely devastating. Olivia had already overcome so much with her hearing loss. To learn that she now faced another potential obstacle, one that would affect her vision, felt incredibly unfair. She didn't deserve another challenge.
As her mother, one of the hardest feelings I have ever experienced is knowing that I cannot fix this for her. I would take this from her in an instant if I could. Instead, we live with uncertainty. Each day feels like waiting—waiting to see what might come, hoping for good news and fearing the possibility of bad.
The challenges she faces are numerous, and one is simply accessing the specialized care Olivia needs. Finding a retinal specialist with the experience and expertise to provide knowledgeable care for someone with Usher syndrome requires us to travel six hours by car. We are grateful to have access to an experienced specialist, but the distance adds another layer of difficulty to navigating an already complex diagnosis.
And yet, through all of this, Olivia continues to show us what resilience looks like. We are incredibly blessed that Olivia is still able to enjoy the things she loves and live her daily life independently. Her diagnosis has not changed the person she is.
If anything, it has made us appreciate every moment even more.
I cannot put into words what a treatment would mean for Olivia and our family. It would mean everything. A treatment would completely change the future for Olivia—and for so many other people living with Usher 1F. It would mean the possibility of preserving the vision and independence that allow Olivia to continue living the life she loves.
Research and development are the keys to preserving the future for every person living with Usher 1F. We cannot stop pushing forward. We cannot stop raising awareness. And we cannot stop raising the funds necessary to turn promising research into real treatments.
For families like ours, research isn't just science. It is hope. It is possibility. It is Olivia's future.
Every discovery brings us one step closer to a future where families don't have to sit in that place of uncertainty, wondering what their loved one may lose next.
Olivia has already shown us how strong and resilient she is. Now we need the research community, donors, and supporters to keep fighting alongside her.
Please keep pushing. Keep raising awareness. Keep investing in research.
Because for Olivia and every person living with Usher 1F, their future is worth fighting for.
