personal fundraiser
Joey Poalise
This Is Usher Syndrome — This Is Joey
In November 2024, our world changed forever. Our youngest son, Joey, was diagnosed with Usher Syndrome Type 2C — a rare genetic disorder that causes both hearing loss and progressive vision loss.
But our story began long before that diagnosis.
From the very beginning, Joey kept us on our toes. In the second trimester of pregnancy, we received the first of what would become many concerning updates. Joey was behind in some areas of development while in utero, and we quickly found ourselves in a whirlwind of uncertainty.
His first diagnosis was dysgenesis of the corpus callosum (DCC) — a rare condition where the structure that connects the two sides of the brain wasn’t fully developed. Over 35 ultrasounds were performed throughout the pregnancy, including a fetal MRI. That feeling of “what now?” became a theme — one that, in many ways, still echoes through our lives today.
Still, Joey arrived strong. Birth was normal. For a moment, the fear faded — until the newborn hearing test.
Like many families, we were told it was probably just fluid in his ears. But deep down, we knew it wasn’t. Eventually, we learned Joey had bilateral sensorineural hearing loss. He was fitted for hearing aids at just five months old. We tried to make sense of it.
We were referred to a pediatric ophthalmologist to rule out any conditions that affect both hearing and vision. They told us his eyes looked great. For the first time, we felt a sense of relief.
Then came the results of the genetic testing: Usher Syndrome — a condition we had never heard of, and one we thought had already been ruled out.
All that time we spent grieving Joey’s hearing loss… and now, we’d give anything if that were all he had to face.
When you hear the word “deafblind,” it sounds like one of the most devastating fates imaginable. We began to reflect on how we used to think about that word — and what life would be like for someone living it.
We never thought it could become our reality. But now, it is.
And yet, every single day, Joey proves that even this reality is filled with light, laughter, and life.
He’s rambunctious. Determined. A feisty toddler who smiles through every challenge.
And to us, he is absolutely perfect.
There have been countless sleepless nights filled with “Why?”
Why our son? Why this diagnosis? Why does he deserve these challenges?
But like I recently read: with grief comes hope.
And that’s what we’re holding onto.
Joey is only one year old. His story is just beginning.
We believe in Joey’s future. We believe in science.
And we believe that, with your help, someone out there can find a cure.
This campaign is our way of fighting back, of building momentum, and of giving Joey the brightest future possible.
We’re so glad you’re here — and we thank you, from the bottom of our hearts, for standing beside our brave little fighter.