Jordi was diagnosed with Usher Syndrome type 1B this past year, at age 6. When he was 10 months old, he underwent surgery to get bilateral implants, and his daily life since then has been a constant struggle to compensate for his muscle hypotonia, his lack of balance, and delayed speech development.

Retinitis Pigmentosa has already manifested, but no matter what, Jordi still finds ways to have fun and embrace life. Jordi loves riding bikes and scooters, ride-a-kart, and driving his mountain bike; he eagerly reads books and draws with markers. He also loves cars, pizza, and movie nights at home. His dream is to one day be able to drive a car!

Jordi still does not know what Usher Syndrome 1B is, nor what it could mean for him in the long term future.

Please help us by spreading the word about his condition. Let’s keep Jordi’s inner light shining bright no matter what.

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