Blind and Deaf 3-Year-Old With Rare Disorder Hears Mom's Voice for the First Time With Cochlear Implant
Gavin, 3, has a rare genetic disorder known as USP9X, which causes conditions including deafness and blindness.
For one New York mom, all the hard work that went into raising a son with special needs was worth it when 3-year-old Gavin heard her voice clearly for the first time after being fitted with a cochlear implant.
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 in an interview with WIVB. "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.
"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."
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