When 2-year-old Santi gets the hiccups, something happens that doctors still can’t explain: his paralyzed little face suddenly lights up with a fleeting, beautiful smile.
And that one unexplained moment, caught on video, has captured hearts around the world.
“We were like, are we tripping here? Are we seeing what we’re seeing?” mom Roxy said, remembering the first time she and wife April saw their son’s face break into a grin. “Every single time he gets the hiccups, we record him.”
The viral clip has turned Santi into an unexpected symbol of hope, a child born without the ability to smile, now delivering joy with every hiccup.
Santi was born with Moebius syndrome, an ultra-rare neurological disorder that paralyzes facial muscles. From the moment he was born, silent, not crying, and without expression, Roxy said she knew something wasn’t right.
“He never cried… his eyes were rolling in the back of his head,” she said. “He had really no facial expression, so I was super concerned.”
But despite Roxy’s intuition, doctors said everything was fine. “I’ve had three boys. I know that it’s not,” she thought. For three days, Santi didn’t blink, didn’t latch, and didn’t cry.
So Roxy turned to the internet and stumbled on something she’d never heard of: Moebius syndrome. When their pediatrician returned from vacation, she listened, and within hours, Santi was admitted to the NICU. A specialist confirmed it.
“He could be in a vegetative state for the rest of his life. He could pass away,” Roxy remembers the doctor saying. “It was devastating.”
It had already been a long road. Roxy and April, together for 16 years, had built their family through reciprocal IVF, Roxy carried their first three sons with April’s eggs, then April carried Santi using Roxy’s. The pregnancy was complicated from the start.
April started bleeding early on, and a doctor handed her medication to terminate, saying she was miscarrying. “She was so mad… she just wadded it up and threw it in the trash,” Roxy said. It turns out, that decision may have saved Santi’s life.
Even after birth, Santi’s challenges continued. He was silently aspirating, couldn’t blink, and dropped more than a pound in just a few days. Some doctors had never even heard of Moebius outside of textbooks. “Had we left him untreated and come home… he could have starved to death,” Roxy said.
Today, Santi still needs constant care. He’s fed through a G-tube six times a day, needs eye drops so his eyes don’t dry out, and his family meticulously plans every outing, right down to packing the charger for his feeding pump.
But the miracle hiccup smile? That’s become their beacon. “Every time he gets the hiccups, he still smiles,” Roxy said. “It makes us so happy.”
Doctors can’t explain it. “We talked to his neurologist… and he said, ‘I don’t know. We don’t have enough research on Moebius to know.’”
Still, they’re hopeful. A potential smile surgery is on the table when Santi turns 4. It’s complex, expensive, and uncertain, but it could help him express on the outside what he already feels inside.
“For us, it seems like a little tiny smile on him,” Roxy said. “But more importantly, now they know what Moebius syndrome is.”
And they’re teaching the world what it isn’t. “The main misconception is that they’re not happy,” she said. “Santi is a super happy baby. He just can’t smile.”
April said she agrees. “People think they’re severely delayed. They talk to them like they’re not there. And they do understand. They do.”
Today, Santi’s videos are giving hope to other families, just like they once gave it to Roxy and April. “When I was researching Moebius, the first place I went was TikTok,” Roxy said.
Now, others come to them. “Families reach out to me in Spanish and English,” she said. “A woman from Ecuador wrote to me this morning.”
“It’s so unique to have a family with all special needs children,” she said. “But I think April and I have been strong through this.”
She said she hopes the world catches up. “Moebius syndrome does not define anybody. Just because you don’t see the smile doesn’t mean it’s not there.”
For now, they wait for the next hiccup, and the next miracle smile.
