Sirus Miklos: Stronger Than Spinal Muscular Atrophy
August 4, 2025
Every child deserves the chance to explore the world and grow into exactly who they’re meant to be. But for kids like seven-year-old Sirus Miklos, a 2025 Schreiber Ambassador diagnosed with Spinal Muscular Atrophy, the path forward isn’t just uphill. It’s unpredictable, unpaved, and often lonely without the right support system. This August, as we recognize Spinal Muscular Atrophy Awareness Month, we’re celebrating Sirus, a natural born leader who’s showing us what real strength looks like.
A Quiet Shift Marked by Subtle Signs
Sirus was a healthy, curious baby who seemed to take in the world with wide eyes and big smiles. For the first six months, he hit every milestone right on time. But then things changed. His parents, Danielle and Nathan, noticed he was losing skills he had just gained. His once strong, stable body started to feel softer, and he tired more easily. By nine months old, their instincts told them something was wrong.
The diagnosis came like a tidal wave: Spinal Muscular Atrophy Type 2, a progressive neuromuscular condition that would impact his ability to move, swallow, and even breathe. There were a lot of tears, and even more questions with no easy answers. But the Children’s Hospital of Philadelphia offered an option, a new gene therapy treatment called Zolgensma.
Just after his first birthday, Sirus received this breakthrough therapy. While it couldn’t reverse the effects of SMA, it could halt its progression, giving his family hope and the chance to rebuild.
The Right Place at the Right Time
That’s when they found Schreiber.
Following a strong recommendation from his CHOP care team (who said, “If you can get into Schreiber, do it. It will change his life”), Sirus began physical and occupational therapy. Three years later, he’s still working hard every week to build strength and independence in a place that feels more like a second home than a clinic.
In physical therapy, both on land and in the pool, Sirus works with Liz to build his core and lower body strength. The buoyancy of aquatic therapy lets him move with a freedom he doesn’t always feel on land, but it’s in the gym where his daily progress gets put to the test. It’s hard work, but the goal is always the same: independence.
In occupational therapy, Alissa meets Sirus where he’s at. Some days, he’s energized and ready to take on a challenge; other days, he’s feeling uncertain about trying something new. They may focus on practical life skills, like dressing himself after a swim session, or play games like Banana Blast to build coordination and grip strength. No matter the task, she keeps him engaged, encouraged, and having fun.
“Even when we’re not in a session, our therapists’ advice is always in the back of our minds,” Danielle said. “They’ve completely changed how we think about Sirus’ physical limitations.”
The therapists don’t go easy on him, but they do understand him. They match his sass with playfulness, encourage his independence, and adapt every session to his mood and abilities. Most importantly, they work together as a team with a shared mission: helping Sirus grow into the most age-appropriately independent version of himself.
A Natural Born Advocate
Today, Sirus faces the world with a fully charged sense of confidence. At school, he knows how to speak up when he needs help, and how to explain that doing something differently doesn’t mean doing it wrong. His natural ability to advocate for himself and others with disabilities is already shaping the way people see accessibility and inclusion.
He also just makes people feel good. His warmth, curiosity, and humor draw others in. He sees people, really sees them, and makes sure they feel heard. He’s silly, he’s sharp, he’s full of joy. He loves fishing with his dad, building in Minecraft, telling jokes, and asking endless questions.
But don’t mistake his playfulness for ease. Everything he’s gained has been earned through effort, perseverance, and a team that believes in him.
Writing His Own Story
When Sirus first came to Schreiber, he couldn’t move without help. Today, he rolls into every room ready to participate. He’s building the strength to hold a fishing rod, the coordination to build entire pixelated worlds, and the stamina to make it through a full school day without missing a beat.
His family once received a long list of things he might never do. Now, they spend their time talking about what’s next.
“Schreiber changed Sirus’ life, and ours,” said Danielle. “They’re in the trenches with us every day, and that kind of support is invaluable.”
Raising Expectations
This SMA Awareness Month, we’re raising expectations for Sirus, and for every child who comes to Schreiber facing a diagnosis that tries to limit their future. We’re here to open doors to possibility, powered by personalized therapy, fierce determination, and a community that believes in every child’s potential.
Because kids like Sirus don’t just navigate the world; they change it.
Get Our eNewsletter
Stay informed and inspired
Subscribe to our newsletter for the latest Schreiber news, events, and stories. You can also follow us on Facebook, Instagram, LinkedIn, and YouTube..