Jan 2017  Fox News Health and CBS 8 San Diego

Little Gavin Arroyo, of Buffalo, was born severely deaf and blind due to an extremely rare genetic disorder. Over time, his hearing grew worse, until doctors decided he was ready to undergo a 6-hour surgery to be fitted for a cochlear implant. "It was really a no-brainer," his mom, Jennifer Arroyo, said. "We have to do it, especially with his low vision.” When Gavin heard his mom's voice for the first time in December, it was clear they had made the right decision in helping him experience sound. He could be seen in a video suddenly perking up as they activated the implant, and leaning in to kiss his mother as he heard her voice.

Gavin"You see a kid like Gavin and you don't know what to do with him," Arroyo said. "He's so medically complex, and now that we're figuring him out, we certainly have more good days than bad”. Arroyo said she first discovered something was wrong when she gave birth to Gavin via emergency C-section 6 weeks premature, despite having a healthy pregnancy. After months of struggling with his vision, hearing, various sicknesses and other special needs, a California company was able to provide a rare and expensive genetic test for a reduced cost. They then discovered little Gavin had a genetic disorder so uncommon that it has no name, and only goes by USP9X. "It's super rare. Literally 23 people in the entire world have it," Arroyo explained. "It's the reason for his deafness. It's the reason for his blindness. It's why he's always so sick. It's why he's had so many different things.” In lieu of hearing or sight, the 3-year-old relies on taste and touch. But, Arroyo said she has been able to get through the good and the bad by always having a positive outlook, and offering her son unconditional love. "This is what a mom does, a mom loves her kid," Arroyo said. "Even in my darkest moments, where I'm crying and I'm frustrated, and I'm like 'Oh, why is this?' I'm going to be okay. He's going to be okay. We've come way too far to not be okay.”

 The video of Gavin’s December implant, which has been shared on his Facebook support page and was captured by his sister Stephanie, shows the boy lean in to kiss his mother after hearing her voice. “It was amazing, Jeni said, his tiny little response -- he didn’t freak out. When he heard me, he pointed at my mouth and it was the most overwhelming moment.” The Buffalo, 

New York, family had been raising funds for Gavin’s implant on a GoFundMe page after learning the extent of his medical issues last year. “As his mom, I’m doing what I’m supposed to do for him, that means I have to figure it out. I’ll always figure it out.”

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Here is a link to Deafblindness support and information.
They are based in Western Australia and supported by Senses Australia.

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