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Newsweek
02-07-2025
- Health
- Newsweek
Watch: Moment Woman With ALS Recovers Voice With AI
Based on facts, either observed and verified firsthand by the reporter, or reported and verified from knowledgeable sources. Newsweek AI is in beta. Translations may contain inaccuracies—please refer to the original content. Debbie Lopez lost her voice to a muscle-weakening disease, but with the help of new artificial intelligence (AI) technology, she is speaking to her family again, Monroe Community Hospital (MCH) in Rochester, New York, confirmed to Newsweek. Why It Matters Lopez, who has been a patient at MCH since February, was diagnosed with ALS (amyotrophic lateral sclerosis) in 2019. ALS is a disease that affects the nerve cells in the body, causing the muscles to become weak and can lead to paralysis and loss of voice. No singular cause has been identified for most causes of ALS, with some research into factors that may be linked, such as heredity, environmental exposures, and diet, among others. About 30,000 people in the United States are living with ALS, according to estimates from the Centers for Disease Control and Prevention, which notes that tracking the disease can be challenging. AI technology is rapidly transforming society, reshaping jobs, productivity and advancements across sectors, including medicine. What to Know Several years ago, Lopez, 39, started a YouTube channel, Living with Lemons, to document her health journey, raise awareness, and provide comfort to others going through a similar experience. The channel has ended up being able to give Lopez her voice back, as speech pathologist Jaime Spencer, who provides care to Lopez at MCH explained, "We were able to get her voice from using her YouTube channel," adding, "and from there they were able to clone anything that she wants to say." The AI voice, which mirrors Lopez's, can now mimic anything Lopez types, thanks to the content from her YouTube videos and the technology's ability to replicate speech. MCH shared with Newsweek a video of Lopez breaking into a smile as she hears her voice from the device, saying in what sounds just like her, "Hi, I am Debbie Lopez." A screen grab of a Monroe Community Hospital video showing Debbie Lopez, a patient with ALS, hearing her voice from AI. A screen grab of a Monroe Community Hospital video showing Debbie Lopez, a patient with ALS, hearing her voice from AI. Monroe Community Hospital Lopez uses an Eyegaze device to control what the AI says, allowing her to direct and select items with her eyes, send messages and surf the web, among other features. "Cameras on the device track her eye movements and she can look at different parts of her monitor for either letters, words, or popular phrases or presets she has on her communications device," an MCH spokesperson told Newsweek in an email Wednesday. In the MCH video explaining Lopez's health journey and the use of the AI, Spencer said, "This new software and this new technology has been amazing because it allows patients and individuals to preserve some of the most intimate parts of them and what makes you you, is your voice." Lopez, through the AI, says in the video, "Even if I can't make a sound, I still have a voice." Lopez and her team at MCH are working on preserving her voice for her three children and family members by reading and recording some of her favorite children's books. What Happens Next Lopez remains in high spirits despite the severity of her disease, saying, "It's broken everyone who loves me and everyone I love, but it hasn't broken me," and adding, "I get to see the best in everyone." AI is increasingly being used in medical settings, from diagnostics and predictive analytics to assisted surgeries and the development of new treatments. "ALS can be pretty isolating. Patients lose function of much of their body parts. Anything that helps restore a sense of normalcy is a huge benefit," a MCH spokesperson told Newsweek.
Yahoo
10-04-2025
- Health
- Yahoo
Devoted caretaker praised by family of girl with rare disease
MOORE, Okla. (KFOR) – Imagine the joy of holding your newborn for the first time, only to hear doctors say your baby would live to the age of two. That's what the parents of a baby in Moore were devastated to hear when their little girl was born with a rare disease. But, this little girl far surpassed two—in fact, she's about to celebrate her 16th birthday. And her family credits her long-term caretaker, Rhonda Monks, for lengthening her life. 'She's smart. She knew the capitols of every state,' said her proud grandpa, Davy Russell. Arianna Wilson Russell was born with SMA, or spinal muscular atrophy, a rare genetic disease that leads to breathing and swallowing difficulties. Pay It 4Ward: A faithful Norman tax preparer works for free 'She's a fighter, a tough little gal. So proud of her. It's hard. She means the world to me,' Davy said with tears in his eyes. Arianna can talk, and these are the words Davy loves most to hear: ''I love you, Grandpa.'' But much of Arianna's communication is done with her eyes. The sophomore uses an Eyegaze system to complete school work, attend doctor visits, and speech therapy—and she even edits videos for her YouTube channel! Standing by her side, where you'll often find her, Rhonda said, 'She emails her friends and she has a special friend.' 'We're more than just friends,' replied Alyssa. Rhonda has cared for Arianna for nearly 10 years, and plans to stay as long as she's needed. Rhonda's care is the reason Arianna's father, Gerald Russell, believes his daughter has blown her estimated life expectancy out of the water. 'Can't say enough about her. Can never be replaced. She's family,' Gerald said of Rhonda. To truly understand the depth of their gratitude, you must also understand the depth of their grief. Arianna had an older sister also diagnosed with SMA. Cadence lived for just three months. 'Lost her Christmas Day,' Davy said, 'Probably one of the saddest days of my life.' But because Cadence's younger sister is thriving, Davy nominated Rhonda for a surprise Pay It 4Ward award from First Fidelity Bank. 'I've walked some of the same path': Counselor guides Bethany man to the road of success 'We are so thankful for people like Rhonda and the care that they put into everything they do, especially with kids of all kinds of needs. So, we are very excited to present $400 for her today,' said First Fidelity Bank Representative Caitlin Melgar. As Davy handed the money to Rhonda, he said, 'Letting you know how much I appreciate you. You're awesome. Arianna loves you to death. The family loves you to death. You mean the world to us.' 'Is it okay if I hug you?' Rhonda asked. With arms outstretched, Davy replied, 'Yes, ma'am.' 'She is such a blessing, and I'm honored to be able to be her caregiver,' Rhonda said of Arianna. 'She's such a fun kid, and she makes my life better. She's grown a lot in her attitude, mind, body, spirit. We got to teach her how to read. And she's taught us as much or more as we've taught her.' 'Does your head need to come up?' Rhonda asked Arianna. 'A little bit, thank you,' she said. 'You're welcome. Arianna has very good manners, she's very kind,' Rhonda said. 'The doctors are all surprised,' Gerald said. 'All of them keep saying to just keep doing what she's doing. There's no end in sight now, the girl's gonna keep going – and it's something pretty magical.' A magical journey for all who know Arianna, now about to celebrate her Sweet 16th, as she continues to shatter the odds. 'I am brave,' Arianna said proudly. Yes, she truly is. Pay it 4Ward is sponsored by First Fidelity 2025 Nexstar Media, Inc. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.