Every child deserves the chance to find their passion and chase their dreams unincumbered by limitations. But for children with Pfeiffer Syndrome, like Ryley Nazario, 2025 Schreiber Ambassador, that journey comes with more obstacles than most will ever face. This March, as we recognize Pfeiffer Syndrome Awareness Month, the Schreiber Center for Pediatric Development is shining a spotlight on Ryley’s incredible story.
Ryley’s Journey with Pfeiffer Syndrome
Born with Pfeiffer Syndrome, a rare genetic condition that affects the development of the skull, face, and limbs, Ryley has spent much of her life in and out of the operating room, undergoing an astonishing 28 surgeries to help her breathe, grow, and move more freely. At just 11 years old, she has already faced more medical challenges than most will in a lifetime. But if you ask her, that’s not what defines her.
Ryley is an artist, singer, pianist, and gamer with a personality that shines as bright as her smile. She’s a kid who loves mac & cheese, collects stickers, and dreams of starting her own YouTube channel. She’s fearless, smart, and just a little bit sassy. Beyond these talents, her curiosity leads her to ask questions about everything around her, making every new person a potential friend and every experience a chance to learn something new. Her love for learning, deep affection for family, and adventurous spirit reveal a brave heart determined to explore the world, even when faced with challenges. Behind her bold spirit is a child who has worked incredibly hard to gain the independence many take for granted.
Why Therapy Matters for Kids with Pfeiffer Syndrome
For children with Pfeiffer Syndrome, therapy is an essential part of life that helps them learn to complete everyday tasks with modifications as necessary. A milestone as pivotal as speaking can be delayed months or even years due to airway complications many of these children are born with which require a tracheostomy. This procedure creates an opening in the windpipe through the child’s neck to provide an airway from breathing, making speech difficult.
Like many others in her shoes, Ryley lived with a trach for several years before having it removed, during which time she worked with a speech therapist to strengthen the muscles in her mouth, tongue, and throat needed for speaking, breathing, and swallowing. Every word she speaks, every song she sings, and every laugh she shares are victories made possible by years of therapy.
And then there’s physical therapy, which has been a game-changer in Ryley’s recovery after each major surgery. She faces each challenge and temporary setback head-on with the determination to overcome and conquer. During physical therapy she is rebuilding her strength and regaining her balance so that she can get back to living her life on her own terms as quickly as possible. When she’s not facing another surgical recovery, her goals in physical therapy adapt to be more lifestyle focused, helping her achieve milestones like climbing stairs, riding a bike and scooter, and taking on the biggest slide at the playground.
Occupational therapy is just as critical to the growth and progress of kids like Ryley. With fused elbows and limited mobility in her arms, she has had to work with her occupational therapist to find and learn new ways to accomplish everyday tasks. Things like brushing her hair, tying her shoes, and preparing her own meals need to be modified to fit her physical capabilities. As she grows, therapy continues to help her adapt and learn more life skills that allow her to be more independent. Ryley’s goal is to be able to go away to college and live on her own without needing the assistance of family members or therapists to simply live her life, and the adaptations she’s learning today will ensure she has the ability to take care of herself as she gets older.
A Second Home at Schreiber
Four years ago, before Ryley and her family moved from New York to Pennsylvania, they spent months researching the best therapy centers in Central PA to make sure Ryley would have the best possible care as she grew up. Their research, and recommendations from local specialists and healthcare professionals, led them straight to Schreiber’s door. By the time they had made the move to Pennsylvania Ryley was already on the schedule to begin weekly therapy sessions which have become a cornerstone to her progress.
“As a parent, you just want to give your child every opportunity to succeed,” says Ryley’s mom, Vanessa Nazario. “We’ve watched her grow so much at Schreiber. She’s more independent, more confident, and more determined than ever.”
For families navigating a rare diagnosis like Pfeiffer Syndrome, finding the right support and team to guide you through the challenges and celebrate the successes alongside you can make all the difference. The Schreiber Center is proud to be a vital piece of Ryley’s story, giving her the knowledge and tools to succeed while also empowering her parents with resources and strategies to help her thrive beyond our walls.
Join Us in Making a Difference
This Pfeiffer Syndrome Awareness Month, Schreiber invites the community to support children like Ryley by donating, volunteering, or becoming a sponsor to support our mission. Every contribution helps ensure that children with disabilities, developmental delays, and acquired disabilities receive the life-changing therapy they need.
“Every kid deserves the chance to be independent. Ryley works so hard every day, and Schreiber makes sure she has everything she needs to reach her goals. We’re just so grateful.”
