Lia is 4 years old and lives in the Bay Area, California. We learned Lia was deaf 2 weeks after she was born and we were shocked and crushed as new parents. As we slowly began to come to terms with her diagnosis and just started to feel comfortable again, our geneticist revealed the cause of her hearing loss – Usher Syndrome Type 1B. We knew that meant Lia would start to lose her vision at a very young age and she would have significant balance issues for the rest of her life. Learning our baby daughter had a rare genetic disorder with such significant sensorial loss was surreal and heart breaking, were still learning how to cope with it as we raise this incredible little soul. We move on one day at a time with her as the center of our universe and the source of our happiness. We find hope in medical advances that will lead to a treatment. Don’t let that cute smile fool you, this little carb lover is stubborn as an ox and smart as a whip. When she’s not hugging up on her favorite stuffed animal – “hedge hog” – she’s barking orders at mommy and daddy to read more books to her.

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