WaPo: Deaf baby gets gene therapy trial in England

Here is an article from the Washington Post about an 18-month-old baby girl who was born deaf and is now able to hear after receiving gene therapy.

Her name is Opal Sandy and she is from England. She received the gene therapy treatment at a hospital in Cambridge.

Opal and her older sister were born deaf due to a rare genetic condition called auditory neuropathy. This is due to a variation in the OTOF gene. She was born with genes that did not function properly.

Recent news stories that I’ve covered about gene therapy treatments involving deaf people are usually associated with this OTOF gene. It is just one of the many different causes of deafness.

She received a gene therapy infusion to her right ear via an injection into her right cochlea during surgery. Within four weeks, she could respond to sounds. In another 20 weeks, she has almost normal hearing in her right ear and can hear soft sounds, including whispering.

Her left ear was fitted with a cochlear implant during the same time she got the gene therapy injection in her right ear. It’s not clear from the article why she didn’t also get gene therapy treatment in her left ear.

Opal was treated during a clinical trial, which was sponsored by a U.S. biotechnology company called Regeneron.

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An ear surgeon at the hospital said the results were spectacular and he hopes that this is the start of a new era for gene therapies for many types of hearing loss.

Naturally, in the Deaf community, gene therapy is a very controversial and sensitive topic because it raises existential questions about Deaf identity, language, and culture.

This treatment of Opal and the news attention it’s received only adds to previous news stories of successful gene therapies in China and here in the U.S. I’m seeing more now.

https://www.washingtonpost.com/world/2024/05/09/opal-sandy-deaf-baby-gene-trial/