MY DEAF SON CAN HEAR AGAIN THANKS TO NEW MIRACLE DRUG
Sierra Smith remembers the moment when her son heard her voice for the first time.
Travis Smith, now two, was diagnosed as deaf shortly after he was born, became one of the first children in the US to undergo an experimental procedure to restore his hearing last June.
It didn’t work immediately, but a few months later, Ms Smith was travelling in the car with Travis when she laughed – and for the first time in his life, he reacted.
“He just kind of jumped. And I was like, ‘Huh? I wonder if he heard me?’ And so I started screaming his name … he would blink really hard, like he was surprised by it,” she said.
In April, Donald Trump, the US president, hailed Otarmeni, the gene therapy that gave Travis the ability to hear, as a “miracle cure”, approving its use across the country.
Travis was born with a disorder known as auditory neuropathy, meaning sounds could not travel from his inner ear to his brain. For Ms Smith, the realisation that he could not – perhaps would never – hear her voice was painful.
“I had a friend that had a baby around the same time as me,” Ms Smith, a 26-year-old single mother who lives in upstate New York, told The Telegraph.
“To see her son start to talk and exactly hear all these things and realise he had a name … it was really hard for me to see.”
Around 30 to 50 babies are born with Travis’s condition in the US every year, making up roughly 1 per cent of cases of genetic deafness, said Dr Lawrence Lustig, a hearing specialist who carried out the surgery.
“The sound is coming into the ear, all of the nerves are hooked up, and the feedback mechanisms to hearing are still intact, but the sound’s just not getting from the ear back to the nerve going to the brain,” he said.
Ms Smith threw herself into the mission to find a treatment for her son, tearing through journals and articles and sending out about a “million” emails to doctors.
After discovering that a girl in the UK had successfully had treatment for auditory neuropathy, she contacted Dr Lustig to join the clinical trial.
At that point, the treatment still hadn’t been approved on either side of the Atlantic. It was a gamble. But at stake, Ms Smith believed, was her son’s ability to make friends, have a career and live a normal life like any of the children born without knowing how lucky they are to hear.
‘It was definitely scary’
“We didn’t know the risks of the surgery,” she said. “I signed a ton of paperwork saying, you don’t know the risks of it. It was definitely scary.”
“What [Otarmeni] does is it takes the protein – the DNA coding for the protein – and it’s cut in half, because it’s a pretty big piece of DNA,” Dr Lustig said.
“This concoction is squirted into the inner ear,” and DNA is injected “into the hair cell, which is sort of the critical sensory cell,” Dr Lustig continued.
“The two pieces combine into the full-length protein that’s missing. This allows the hair cell to start communicating with the nerve going to the brain, and then the child starts to hear from that point going forward.”
That’s from the perspective of a doctor. From the perspective of a mother, sitting outside an operating theatre for five or six hours, it’s a very different process to go through.
“It’s scary as a mum, it sounds like they’re drilling into his head, and they’re doing this crazy thing they’ve never really done before,” Ms Smith said.
“Dr Lustig … came out after the surgery and said, ‘Hey, it went great. We had to readjust his skull a little bit, or reconstruct his skull.’”
“Don’t worry, I do it all the time,” Dr Lustig added, by way of reassurance.
Child’s hearing has improved dramatically
Since that lightbulb moment when Travis first heard his mother’s voice, his hearing has improved – dramatically at first, and then more subtly.
With mild hearing loss in his right ear, and more moderate in his left, he will probably need hearing aids to provide an “extra boost”. Three quarters of the children who were involved in the trial needed hearing aids. He has not yet started talking, Ms Smith “can’t wait” until he does.
“I didn’t think we’d see this in my lifetime. It’s so exciting to actually be here. We’ve been talking about gene therapy for genetic hearing loss for 20 years, and now we’re finally here,” Dr Lustig said.
Regeneron, the pharmaceutical company, has said it will provide the gene therapy free – although it concedes this “may not necessarily reflect out-of-pocket costs for administration” by medical providers.
Travis’s life has changed in other ways, too. He was hailed as an extraordinary medical case in April when he visited the White House with his mother, and Mr Trump announced that Otarmeni had been licenced by the food and drug administration.
After taking the “miracle cure”, he could now “hear his mum, Sierra, say ‘I love you’,” the president said, while Robert F Kennedy, the US secretary of health and human services, watched on.
Travis didn’t let the weight of the occasion get to him, fighting his way out of his mother’s arms and rolling around on the Oval Office rug. He wouldn’t have known it at the time, but history was being made.
2026-05-06T16:40:46Z
