Everett Tynes sat up in his hospital bed at Boston Children's Hospital in early August, blowing raspberries and paging through a children's book that played music he could not hear. He is 16 months old. He has been deaf since he was born. And that morning, surgeons were about to try something no child in the United States had received outside a clinical trial: a working copy of the gene his ears were missing, infused directly into his inner ear.

Everett's parents, Leah Hamel, 39, and Andrew Tynes, live in Birmingham, Alabama. Neither has any family history of hearing loss, so they were stunned when their son failed newborn hearing screening, then failed it again. "That's when things started to settle in to be more permanent," Hamel told The Boston Globe. "It was a really difficult first year of motherhood." Everett got hearing aids at nine months. Genetic testing around his first birthday finally named the cause: auditory neuropathy caused by variants in the OTOF gene, which means his cochlea is beautifully built but cannot pass sound along to his brain.

A week after that result, Hamel started searching online — and found Otarmeni (lunsotogene parvec-cwha), which the FDA had approved in April 2026 as the first gene therapy for genetic hearing loss. It uses a modified, non-infectious virus to carry a functional OTOF gene into the cells of the cochlea, where it instructs them to make otoferlin, the missing messenger protein. Everett became the first patient treated at Boston Children's after the approval.

A one-time surgery, and then the waiting

Dr. A. Eliot Shearer, the pediatric ear, nose, and throat surgeon who treated Everett and an investigator on the therapy's CHORD trial, said the infusion has to reach the cochlea through a small, membrane-covered opening inside the ear, using a technique similar to cochlear implant surgery. The point, he explained to People, is a more natural kind of hearing than a device can deliver: "The inner ear has thousands of cells tuned to different frequencies that allow us to hear."

In the trial that led to approval, 20 participants aged 10 months to 16 years received a single dose. About 80 percent — 16 of 20 — showed hearing improvement by 24 weeks, and among those followed a full year, 42 percent (five of 12) reached normal hearing levels that included the ability to detect a whisper. The condition is rare: roughly 50 babies a year are born in the US with OTOF-related deafness.

$10,000 for an Airbnb, and better eye contact

Regeneron is providing the therapy itself free to US patients, part of a deal with the federal government for a drug class that can otherwise run past $1 million a dose. The family's costs were the everyday kind. The nearest center with an open slot was about 1,200 miles away, and Everett needed to stay near the hospital for a week before and two weeks after surgery. The couple booked an Airbnb for roughly $10,000 for three weeks, rented a car, bought a car seat, and traveled with their 10-week-old second son. A relative started a GoFundMe. "We need to stretch the budget as you have to for your son's hearing," Tynes said. "If it potentially works, it was worth it."

Hearing, if it comes, comes slowly over weeks and months. Hamel is careful about what she claims so far — "Whether he can hear yet or not, I don't know," she said — but she and Tynes have noticed their independent little boy playing with them more, and making better eye contact. "He's shown a lot more awareness of his surroundings," she said. "We're feeling really thankful this even exists."

Boston Children's says more patients are queued up behind him. Somewhere in an Alabama living room this fall, a family will be listening very closely for the first time a whisper lands.