Giving Gavin the gift of sound

BUFFALO, N.Y. (WIVB) — There’s something about the nature of a mother’s unconditional love; always present even in the midst of life’s biggest challenges.

News 4 introduced viewers to then-18-month-old Gavin last year, as his mom Jennifer Arroyo sought answers to why her baby son was born with a variety genetic disorders.

She sought answers to why he was mostly deaf and blind and often ill since birth.

But last month, Gavin’s dim world grew brighter, when he heard his mother’s voice for the very first time.

That quest continues — with plenty of milestones along the way.

“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 that bad.”

Arroyo’s search for answers began the moment Gavin was born almost three years ago. Despite a healthy pregnancy, Gavin was born by emergency C section 6 weeks early.

“I finally yelled, ‘Why isn’t my kid crying?'” Arroyo said in September 2015. “And the doctor came over, she grabbed me by the face, and she’s like, ‘Ms. Arroyo, you need to prepare yourself because this doesn’t look good.’ And I passed out. That’s the last thing I remember.”

Gavin is mostly blind in one eye and has low vision in the other.

He was diagnosed in 2015 as moderately to severely hearing impaired.

That same year, Arroyo reached out for help to pay for a rare and costly genetic test. A company in California saw her story, and provided the test at a highly reduced cost.

“We got the results of the genetic test,” she said. “Gavin has a condition that doesn’t even have a name. It’s called USP9X. It’s super rare. Literally, 23 people in the entire world have it.”

Little is known about the genetic condition.

But, “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,” she said.

Arroyo’s mentality is always forward, always striving to not just give Gavin a so-called normal life, but appreciating his life, and their life together.

“I’m getting used to things not being what I hoped for when it comes to Gavin,” she said. “And not getting down in that.”

“I refuse to treat him like he’s ‘special.’ I hate even saying that. I don’t like when people do it,” she said. “I don’t see it that way. … I’m not strong. I’m his mom. This is what a mom does. A mom loves her kid.”

The milestones — positive and negative —  kept coming.

In some areas — like language and mobility — he showed improvement.

But his hearing was growing worse. And without intervention, Gavin’s world of sound — the chance to hear his mother’s voice, for example — would become permanently silent. Arroyo and Gavin’s team of doctors decided cochlear implants were the best choice.

“It was really a no-brainer,” she said. “We have to do it, especially with his low vision. The low vision really drives it home. … It just made more sense to (be able to) come at him in a different way.”

In November, Gavin endured the six-hour surgery for cochlear implants. On Dec. 7, his world of sound came to life.

Tears flooded the space between their faces, both happy and sad.

“Mine and Gavin’s whole story has always been based on faith,” Arroyo said. “From the minute he was born, it was based on, know there’s something bigger. Know there’s something greater. I’ve known since he was born that there’s something greater for my child.

She said her faith — beyond religion — is what keeps her positive.

“I always know, 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 OK,” she said. “He’s going to be OK. We’ve come way too far to not be OK.”