He posted the clip on TikTok, expecting maybe a handful of replies. But by morning, the video had exploded — millions of views, thousands of comments and messages from strangers across the globe. For the first time in a long while, he didn’t feel alone.
The response was a stark contrast to the years before, when life had been vivid and full of possibility. Stone remembers those days as a kaleidoscope of experiences, a time when everything felt full of color. At 18, he left his hometown of Crane, Texas, for Austin to study audio engineering at The Recording Conservatory of Austin, fully immersing himself in the city’s electric music scene. He produced tracks, played show after show and even walked the runway for friends in fashion.
For four years, life moved in a blur — late nights in the studio, crowded industry events and lazy afternoons with friends.
“I saw no limits,” Stone, now 26, tells PEOPLE exclusively. “I thought I was just going to keep going like that forever. The world was so exciting.”
Yet, as exhilarating as those years were, the endless pace eventually caught up with him. By summer 2022, life of constant motion began to feel unsustainable. He found himself in Colorado Springs, Co. — serving tables by day while keeping his music alive by night. Initially, the double shifts felt like a natural challenge. But soon, a faint tightness crept into his left foot.
At first, it was easy to dismiss; he was tired. But the tightness didn’t fade, and everyday movements became harder. Bending his foot was a struggle, and he began tripping over rugs at work. Even his doctor chalked it up to overwork. Yet when he visited friends in Los Angeles, Cailf., that September, the subtle changes became impossible to ignore: they noticed his gait was off, and he looked thinner, almost fragile. Stone laughed it off as a “glow-up” back in Colorado, but deep down, he knew something was changing.
“I started walking like a pirate on a peg leg,” he says. Embarrassed, he quit his job, and for the first time, a chilling thought crept in: Something is wrong.
Things escalated weeks later at a friend’s birthday in Austin when he suddenly felt feverish and foggy, as if “stuck in a dream.” Stabbing stomach pain landed him in the emergency room, where doctors blamed COVID-19. But the pain only intensified, and it became increasingly clear that rest and reassurance wouldn’t be enough.
He called his mom, who drove three hours from their hometown to get him. The fear in his chest grew — something inside him was seriously wrong, and yet the answers seemed always just out of reach.
"The next morning, I couldn’t take it anymore," he recalls. "At urgent care, I blurted out, ‘I think I have a blocked intestine.’ I don’t know why I said it, it just came out.”
Initially, the hospital doctor considered sending him home. But Stone insisted on further testing. Finally, they agreed to a CAT scan “just in case.” Minutes later, the doctor burst in: “We’re calling an ambulance. You have an intussusception,” he recalls.
His intestine had folded in on itself, cutting off blood flow and threatening his life. It was an extreme medical emergency, and immediate intervention was crucial.
From there, he spent a week in the hospital, unable to eat and steadily losing weight. On the seventh day, his intestine finally relaxed on its own, only for the problem to strike again the next day. Another ambulance. Another week in the hospital.
During that second stay, a routine reflex test caused his leg to jerk violently, prompting a full spinal MRI. Shockingly, the scan came back clear. He was sent home again, but the heaviness in his legs only grew, a troubling persistence that hinted this was more than just post-hospital weakness.
“I told myself it was just because I’d been in the hospital for two weeks,” he says. “But I never got that strength back.”
It wasn’t until a follow-up appointment that a doctor finally said: “Something bigger is going on. Something dangerous. You need a larger medical center.”
So, Stone and his mom embarked on a two-and-a-half-year road trip across the country in search of answers. The journey was grueling, both physically and emotionally, as his symptoms gradually worsened: stiffness crept up his left arm, followed by increasing weakness throughout his body. Each inconclusive result deepened frustration; each test a reminder that clarity remained elusive.
By the time he reached a geneticist at the Mayo Clinic in Arizona, he was relying on forearm crutches just to stay upright. The doctor suspected a serious, possibly genetic condition and recommended whole genome sequencing — the most comprehensive DNA test available. The catch: results would take six months. Despite the long wait, Stone agreed, hoping for clarity.
While waiting, back home, his condition continued to deteriorate. He upgraded from a cane to a walker and began neurological rehabilitation, doing everything he could to regain strength.
“I didn’t know if it would help, but I was grasping at straws,” he says.
It was during this time that Stone began posting his first TikTok videos — reaching out for advice, searching for someone who could relate.
His posts quickly gained attention, and for the first time, he felt seen, a small but meaningful validation amid uncertainty.
“I could’ve given up right then, but the universe — or whatever — had other plans,” he says. “A lot of people came into my life suddenly, and they’ve become a huge part of my support system. They continue to help me through my day.”
“That was when my attitude really shifted,” he continues. “I realized I’m stronger than I think, and, most importantly, I’m not alone. That was the lowest point, but connecting with people pulled me out of it. It motivated me to get out of bed, kept me going… connection is so powerful.”
Months passed, and finally, the genetic results came back. But instead of answers, Stone was met with frustration: nothing significant was found. The doctor recommended one last step: a custom genetic panel, carefully designed to analyze 902 genes that might explain his symptoms.
While waiting, his condition worsened, landing him back in the hospital. It was there that ALS — amyotrophic lateral sclerosis — was mentioned for the first time, though the neurologist quickly dismissed it. “You’re too young,” they said. At the time, Stone didn’t even know what ALS was.
When the custom panel eventually returned, it revealed a mutation in his SLC1A2 gene, which affects the glutamate transporter. Mutations in this gene can lead to epilepsy, Alzheimer’s, ALS and balance problems. For Stone, who had lived with epilepsy since age two, the finding was a crucial piece of the puzzle, helping him start connecting the dots.
But despite the insight, he spent nearly the next year in medical limbo — uncertain, undiagnosed and searching for answers. During that time, he continued documenting his journey on social media, keeping his 300,000 followers on TikTok and nearly 140,000 followers on Instagram updated. Eventually, he moved back to Austin to regain independence and be near family and friends, where he began seeing an epileptologist for regular check-ins.
It was during one of these appointments that his doctor noticed something unusual: Stone couldn’t squeeze his left hand. He was referred to an ALS neuromuscular specialist and scheduled for an EMG, a rigorous nerve and muscle assessment. Midway through the test, as needles were inserted into his left side, the doctor and technician exchanged a concerned glance.
Four days later, Stone returned with his mom for the results. This time, the diagnosis was definitive: ALS, a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord, causing muscle weakness and loss of control.
While treatments are limited, early intervention can sometimes slow progression. Stone enrolled in a multidisciplinary ALS clinic for ongoing monitoring, but the reality hadn’t fully sunk in. That began to change when he started having trouble breathing — particularly when lying flat.
He went to his GP, who referred him to a pulmonologist. “I told him, ‘Yeah, I was technically diagnosed with ALS,’ and he said, ‘Okay, we need to do a pulmonary function test — like now,' ” Stone recalls.
At the hospital, the test revealed his diaphragm was very weak, explaining why he had difficulty breathing while lying down. He was started on non-invasive ventilation and received his ventilator in March. “That’s when it really started hitting me. I thought, ‘This is scary. This is getting a little too real,’ ” he adds.
“It's crazy — I spent two years trying to get a diagnosis, documenting everything, and then ended up with one of the worst diseases on the planet,” Stone continues.
Yet leaving the office that day, he felt a strange sense of calm. “My body had been in fight-or-flight mode for years, just trying to find answers. Finally, clarity. The question became: What do I do with it?”
He laughs at the memory — but the next step came naturally: sharing the news with the people who had been with him from the beginning.
“It felt so crazy to go on TikTok and say, ‘Guys, we’ve come full circle. After three years of all this, I was finally diagnosed with ALS,’ ” he recalls. “I said there was nothing I could do to change that, but now we can move forward and raise awareness.”
The response online was overwhelming. Followers who had been with him since his earliest TikToks flooded his inbox with messages of love and support. Many said they felt relief that he finally had an answer, even if it wasn’t the one they had hoped for. “The feeling was mutual,” Stone says. “I was relieved to have answers — just not these answers.”
But for him, sharing openly was never just about updates — it was about connection.
“It’s the humanity of it all,” he says. “I want to be raw with people. I want to show every aspect of it, because in return, I see it inspire people to show their true, authentic selves.”
With his diagnosis, Stone has made it his mission to raise awareness about ALS, a disease still shrouded in mystery. Most days, he creates videos, volunteers, connects with associations and reaches out to others living with the disease.
“I can predict exactly what’s going to happen to me, but I still have choices," he says. "I realized I can use this for good, help other people, and bring awareness to a disease that’s severely underfunded and hardly talked about.”
“I truly think that’s my purpose in this life,” he adds. “I want the entire world to know about ALS. It’s so devastating, and yet there are still so many question marks. Scientists, researchers, doctors — they don’t even really know how ALS happens. That’s why awareness matters.”
Even as he pours himself into advocacy and navigates the daily challenges of ALS, Stone searches for moments of normalcy. Though he now spends most of his time in a wheelchair, with his left hand frozen into a claw-like shape and his ability to play guitar lost, he refuses to stop creating music.
Early on, he recorded two hours of his voice to build an AI-powered voice clone, ensuring that when his speech eventually fades, his words will still sound like him. Now, he’s collaborating with an eye-gaze device specialist to attempt something unprecedented: making music using only his eyes.
“It’s strange because I have a 100% fatal disease, but more than ever, I feel like I’m actually living," he says. "I’m fully present. Everything feels slower, and I can truly get the most out of my days. Which is… kind of wild.”
“I think now more than ever, I notice the moments in between — really paying attention to them," he adds. "It’s about the seconds in between the seconds. Everything used to move so fast — another gig, another booking, another show. Now it’s still. Calm."
Most recently, a little over two months ago, the ALS Association reached out with an idea that instantly lit a spark: connecting him with Frankie Torres, a contestant from Season 26 of The Voice on Team Reba, who had lost her father to ALS. They would write a song together for the 2025 ALS NEXUS Convention in Dallas, Texas — one perspective from Stone, living with ALS, and the other from Torres, grieving her father.
Stone didn't hesitate for a single moment.“I said yes before they could even finish the sentence,” he says.
Their first FaceTime call sparked an instant connection. They brainstormed the song, initially planning it to be hopeful and uplifting. But after a particularly difficult day, Stone shared raw journal entries detailing the weight of living with ALS. Those words transformed the song into something honest and unflinching.
Over the next weeks, they recorded the track together. A month and a half after their first conversation, the song was complete. Its world debut came at the ALS NEXUS Convention in Dallas during the Heroes Awards Dinner, honoring those making a lasting impact in the ALS community. Stone performed live from his wheelchair alongside Torres and other Team Reba contestants, filling the room with emotion and love.
"The song is called Losing to the Letters, but it is not about defeat," Stone says. "It is a tribute to every single person affected by ALS. It may feel like we are losing to the letters, but I hope that through advocacy and by pushing for more funding, we can inspire more research and clinical trials that will one day make ALS livable and eventually lead to a cure. I believe with everything in me that day will come. If not in my lifetime, then in the lifetime of someone after me."
"Being 26 years old and living with ALS has taught me a great deal about hope," he adds. "It is easy to let anxiety and fear pull you under when you are faced with a terminal diagnosis, but through this song, I hope people will stand together and know they are never alone."
Jordan Greene
https://people.com/26-year-old-goes-viral-sharing-als-diagnosis-exclusive-11790769
No comments:
Post a Comment