Leo's Story

In September 2022, our beautiful baby boy came into the world. From the moment we met him, we were completely in love with our sweet Leo. His big sister, Lainey, couldn’t wait to meet her baby brother and take on her new role as the best big sister ever.

Before we left the hospital, Leo underwent his newborn hearing screening. When he didn’t pass, the nurses gently assured us not to worry. It was likely just fluid in his ears, they said, and we could retest in a month.

That first month of Leo’s life was magical. We were lost in baby snuggles, sleepy smiles, and the joy of being a family of four. We didn’t dwell on that first test—after all, we were told it was probably nothing.

When it came time for Leo’s follow-up, we walked into the hospital with hopeful hearts. With no history of hearing loss in our families, we felt confident everything would be fine. But when Leo failed his second hearing test, our hearts sank. We loved our boy fiercely, but we were scared. What would this mean for his life, his learning, his future?

Leo’s diagnosis of hearing loss marked the start of many medical tests and appointments. Those early days were full of uncertainty—EKGs, kidney ultrasounds, blood tests, and visits with an ENT. Thankfully, everything came back normal. The final step was genetic testing to understand the cause of his hearing loss.

Even before we had answers, we knew early intervention was essential for Leo’s speech and language development. We advocated for hearing aids as soon as possible, and by six weeks old, he was fitted for his first set of hearing aids.

After several long months, we got the call: Leo has Usher syndrome.

We’ll never forget that moment. We had finally come to terms with Leo’s hearing loss—we were learning about hearing aids, therapy, and communication options—and now we were being told he would also lose his vision over time. It felt like the ground shifted beneath us.

Amid the swirl of medical appointments and emotions, we were connected with Early On, our state’s early intervention program. They told us we were lucky to live in a county with two incredible Deaf and Hard of Hearing programs, and they helped us explore both.

After visiting and meeting the staff, we chose to enroll Leo—then just four months old—in the Oral Deaf Program, which focuses on Listening and Spoken Language (LSL).

From four months to two and a half years old, Leo worked with his incredible teacher who came to our home several times a month. She taught us how to turn everyday moments into opportunities for language—narrating playtime, emphasizing sounds, reading aloud, and celebrating every new word and sound Leo made. She also showed us simple ways to check Leo’s hearing, like using the Ling sounds, turning what could have been a worry into a comforting daily routine that helped us feel confident he was hearing the world around him.

When it was time for Leo to transition to preschool, we were emotional but proud. He is now thriving in his Oral Deaf preschool, surrounded by teachers and specialists who understand his needs and believe in his potential. His hearing aids help him access sound, and his speech and listening skills continue to grow every day.

Learning that your child has a rare condition like Usher syndrome changes everything, but it also opens your eyes to a world of strength, resilience, and community. We’ve met incredible families, educators, audiologists, and medical professionals who dedicate their lives to helping children like Leo reach their full potential.

We’ve also learned how important early detection and genetic testing are. 

We want people to know that while Usher syndrome presents real challenges, it does not define who Leo is or what he can accomplish. He is a bright, curious, joyful little boy who loves music, books, cars, and playing with his sister. His diagnosis is part of his story, but it’s not the whole story.

Our hope in sharing Leo’s journey is to bring more visibility to Usher syndrome, to highlight the power of early intervention and LSL education, and to remind other families facing new diagnoses that they are not alone.