New Gene Therapy Lets Deaf Kids Hear Whispers for Free

Two-year-old Travis Smith jolted awake in his car seat when his mom laughed, reacting to sound for the first time in his life. Just weeks earlier, he'd received a new gene therapy that would transform his silent world into one filled with babbling, music, and eventually the words "I love you."

Otarmeni, a surgically delivered gene therapy developed by Regeneron, recently received FDA approval to treat children born with a rare form of genetic deafness. The results have been dramatic: kids who couldn't hear a gas-powered lawnmower standing right next to it can now hear whispers within a few months of treatment.

The therapy fixes a genetic glitch that prevents the inner ear from communicating properly with the auditory nerve. About 50 babies are born with this specific type of hearing loss each year in the U.S.

Travis was born six weeks early and failed his newborn hearing test. His mom Sierra Smith pushed for genetic testing, which revealed he was a perfect candidate for the experimental treatment.

At 18 months old, Travis underwent surgery to receive Otarmeni. The transformation began within weeks. "He was such a mute baby, very serious," Smith said. "Now he babbles, uses different pitches."

Today, Travis socializes with other kids at library story hour and bops along to Bruno Mars. He's getting speech therapy three times a week, and his mom knows full sentences are coming.

The Ripple Effect

When Smith first learned about the treatment, she was ready to sell everything and take out massive loans so her child could hear her say "I love you." Then she learned Regeneron was offering the therapy completely free in the U.S.

The news brought her father to tears. "We just thought it was the right thing to do here," said Christos Kyratsous, Regeneron's senior vice president. "We thought it was a nice demonstration about the power of science."

The free access means more families can get their children tested for this genetic cause of hearing loss. "For many rare diseases, it's hard to know how many cases are out there, because there aren't many getting thorough genetic tests," said Jonathon Whitton, head of Regeneron's auditory program. Now that an approved therapy exists, more kids are likely to be diagnosed and treated.

This is Regeneron's first approved gene therapy, but it represents a broader shift toward fixing genetic instructions rather than just managing symptoms. The company's approach could pave the way for similar treatments for other genetic conditions.

Smith knows it was scary to let her baby be a medical pioneer, but she's proud of his role in helping future children hear for the first time.