When Sonya Sotinsky learned her life depended on removing her tongue and voice box, a chilling realization struck her: she was about to lose the very essence of who she was. Before the surgery, she sat with a microphone, desperately archiving the sounds she feared she’d never make again.
“Happy birthday” and “I’m proud of you” were among the phrases she carefully preserved for her husband and daughters. She also recorded lines for her architecture firm, anticipating the need to reassure clients with a familiar voice. But it wasn’t just sentimental phrases she needed to save.
Knowing her personality thrived on wit and edge, Sonya meticulously banked a collection of colorful curses and unfiltered expressions. She understood that for her, a voice wasn’t just about communication; it was about identity, about the unfiltered expression of self. “When you can’t use your voice, it is very, very frustrating,” she later explained, recalling the isolating silence before a solution emerged.
The diagnosis of invasive oral cancer at 51 forced Sonya to confront a profound truth: her voice, with its unique inflection and subtle New Jersey accent, was a fingerprint of her being. She refused to surrender it. But her doctors and insurance company offered little support for preserving this vital part of herself.
Driven by determination, Sonya embarked on a quest to find the technology that could replicate her voice. She discovered an artificial intelligence company capable of creating an exact digital copy, using the hours of recordings she’d painstakingly created. This replica now resides within an app on her phone, allowing her to speak again, complete with her signature sarcasm and emotional range.
“She got her sass back,” her daughter, Ela Fuentevilla, shared, her voice thick with emotion. The moment they heard the AI voice, tears flowed freely – a testament to the power of sound and the restoration of a mother’s spirit. It was eerily, beautifully, Sonya.
The journey to diagnosis was a frustrating ordeal. For nearly a year, Sonya reported jaw pain and a strange sensation under her tongue. Water began to dribble down her chin while drinking. It wasn’t until the pain became unbearable, silencing her at the end of each day, that her orthodontist finally took a closer look.
“A shadow cast over his face,” Sonya recalled, describing the moment she knew something was terribly wrong. That’s when the recording began, a frantic attempt to capture a voice slipping away. In the five weeks before her total glossectomy and laryngectomy, she banked every word she could.
“Your voice is your identity,” explained Sue Yom, a radiation oncologist. “Communication isn’t just about expressing ourselves; it’s about how we understand the world.” Losing that voice, Yom emphasized, disrupts the very process of thought and can lead to profound emotional distress, depression, and isolation.
Most patients who undergo laryngectomy learn to speak again using an electrolarynx, a device producing a robotic, monotone sound. But without a tongue, Sonya knew this wouldn’t work. When her surgery took place in January 2022, AI voice technology was still in its early stages, offering only limited, unsatisfactory results.
Hope arrived in mid-2024 with advancements in generative AI, capable of replicating a person’s full emotional range. Sonya’s hours of recordings, particularly her readings of children’s books, proved invaluable. “Eloise saved my voice,” she declared, acknowledging the unexpected power of a beloved character.
Now, Sonya types her thoughts into a text-to-speech app called Whisper, which translates them into her AI voice, broadcast through portable speakers. While many doctors and speech therapists remain unaware of this potential, Sonya’s story is changing that.
Insurance companies, however, prioritize life-extending treatments over quality-of-life improvements. Sonya and her daughter spent months battling Blue Cross Blue Shield of Arizona for reimbursement of the $3,000 assistive technology, only to be denied. “Apparently, having a voice is not considered a medical necessity,” Sonya quipped, her AI voice laced with irony.
She now covers the $99 monthly fee for her AI voice clone out-of-pocket. While health plans typically don’t cover assistive communication devices, the landscape may be shifting as AI’s potential impact on health becomes clearer.
Sonya is determined to help others regain their voices. She’s built a website detailing her journey and speaks at conferences, including one organized by Dr. Yom for 80 scientists. Her story inspired Jennifer De Los Santos, a head-and-neck cancer researcher, to initiate a clinical trial exploring the impact of AI voice technology on patients’ communication and well-being.
Similar battles were fought by breast cancer survivors in the past, advocating for insurance coverage of reconstructive surgery. It took years of patient advocacy and data demonstrating the profound impact on physical and emotional well-being before federal mandates were established. The path for AI voice clones is likely to follow a similar trajectory.
Recently, Sonya’s AI voice played a crucial role when her cancer resurfaced. It allowed her to communicate effectively with her doctors, actively participate in her treatment plan, and feel truly heard. She realized, with renewed clarity, just how “medically necessary” a voice truly is.
Doctors and nurses took her more seriously, recognizing her as a fully engaged human being. “If someone can only communicate using a few words at a time, you can’t detect the depth of their thought,” she explained. “Being able to dialogue seamlessly is vital.”
Now 55, Sonya acknowledges her mortality, facing the reality of a likely shortened lifespan. But she’s also reaffirmed the importance of her voice in maintaining perspective and finding humor in the face of death. “I tend to forget and think I am fine, when in reality, this is forever now,” she admitted.
“Sarcasm is part of my love language,” she typed with a mischievous grin, her AI voice a powerful testament to the enduring spirit of a woman who refused to be silenced.
