personal fundraiser
Olivier Pochon
Meet Olivier — Our Little Fighter
Olivier is the sweetest, most spirited baby — born in the U.S. to French and Italian parents, and the youngest of two energetic boys. From the very beginning, his smile lit up our world.
After failing routine hearing screenings, Olivier was diagnosed with mild to moderate hearing loss. We were quickly enrolled in the Early Intervention program, and he began wearing hearing aids. But within just a few months, his hearing worsened, prompting further testing.
On the eve of the New Year, we were faced with a life-changing possibility: Olivier might have Usher Syndrome Type 2A — a rare genetic condition that affects both hearing and vision. That diagnosis was confirmed last February, when he was just 9 months old.
The news was heartbreaking. But from the start, we’ve chosen hope. We live in a time of incredible medical and technological progress, and we want to do our part to ensure that by the time Olivier’s vision begins to decline — likely in his teenage years — there will be treatments available to preserve his quality of life and that of hundreds of other people around the world.
This journey has already transformed us. It’s taught us to live more fully, to cherish every moment, and to see strength in vulnerability.
Olivier is a force of nature — smart, funny, determined, and endlessly joyful. He doesn’t give up, and we know that spirit will carry him through whatever lies ahead. We’re committed to standing by his side, advocating for research, and fighting for a cure — not just for him, but for everyone affected by Usher Syndrome.
Thank you for being part of Olivier’s story. Your support means the world to us.
The news was heartbreaking. But from the start, we’ve chosen hope. We live in a time of incredible medical and technological progress, and we want to do our part to ensure that by the time Olivier’s vision begins to decline — likely in his teenage years — there will be treatments available to preserve his quality of life and that of hundreds of other people around the world.
This journey has already transformed us. It’s taught us to live more fully, to cherish every moment, and to see strength in vulnerability.
Olivier is a force of nature — smart, funny, determined, and endlessly joyful. He doesn’t give up, and we know that spirit will carry him through whatever lies ahead. We’re committed to standing by his side, advocating for research, and fighting for a cure — not just for him, but for everyone affected by Usher Syndrome.
Thank you for being part of Olivier’s story. Your support means the world to us.