Aissam, the boy who escaped from a world of silence thanks to gene therapy: ‘I’m hearing the...

Aissam Dam lived in a bubble of absolute silence that had lasted the young boy’s entire life. He spent 11 years in a noise-proof penumbra. Not a word, not a shout, not a single voice penetrated the walls of the rare congenital deafness that had marked his life since birth. In his home country of Morocco, he never learned to read or write, barely attended high school and communicated with his family through gestures, in an unofficial sign language, out of a necessity to be understood. Such was his life until a few twists and turns, an innovative gene therapy and several thousand kilometers brought him, with the help of Barcelona’s Hospital Sant Joan de Déu, to a children’s hospital in Philadelphia, where science offered Aissam his first access to the world of sounds. His mother, Naima Tbir, recalls with emotion how, just seven months ago, “the first day after the surgery, his father video called us with him and the child said to me [using signs]: ‘I’m hearing the sounds of the phone!’”

Aissam has become the first person in the Western world (Europe and the United States) to receive gene therapy to treat congenital deafness. In his case, it has been a success: he’s recovered his hearing and can identify sounds, though doctors warn that, given his age, it’s too late to learn spoken language, and he’ll probably never be able to talk fluidly.