Every child should have the chance to make choices and connect with the people around them. For 11-year-old Zoey Adair, that takes more effort than most. She was diagnosed with Rett Syndrome when she was just a toddler, and things like movement and communication don’t come easily anymore. But that doesn’t stop her. Thanks to the love and determination of her family, and the care she’s gotten from the Schreiber Center for Pediatric Development, Zoey has found her own way forward. This October, during Rett Syndrome Awareness Month, we’re sharing her story, because Zoey’s joy and strength and stubborn spark deserve to be seen.
From Questions to Clarity and the Diagnosis That Changed It All
In the beginning, Zoey did a lot of things you’d hope to see. She made strong eye contact, fed herself, played independently with toys. But then, slowly, some of those things started to slip away. Other milestones, like walking or talking, never came. At seven months, she started physical therapy for torticollis and plagiocephaly. Her parents asked questions, and they didn’t stop asking until they got answers.
Eventually, her parents asked for a specific round of genetic testing to rule out Rett Syndrome, a rare neurological disorder that impairs language, movement, and coordination, never expecting the test to come back positive.
That diagnosis changed everything. Zoey’s family had to rethink what progress looked like, and instead of chasing milestones, they shifted their focus to maintaining the skills she still had and protecting the abilities she was already fighting for.
Consistent Care That Grew with Her Needs
That new perspective shaped the care they sought and it’s what led them to Schreiber. Zoey has been a part of the Schreiber community for almost her entire life. She’s participated in speech, occupational, and physical therapy. She’s been through both of Schreiber’s early education programs: Circle of Friends Academy and S.T.A.R.S. Preschool, and she takes part in Camp Schreiber every summer.
Schreiber’s the place where she learned how to use eye gaze technology to tell her family “I love you”. And where she gained the confidence to answer questions and tell people what she thinks. It’s where she has worked consistently to maintain her ability to sit tall, bear weight, and walk with assistance even after major surgeries on her spine and hips.
Her physical therapy sessions aren’t always easy, and sometimes she gets tired or uncomfortable and just wants to stop. But her physical therapist is always ready to pivot and adjust to meet Zoey exactly where she is and help her find the strength to keep going.
Zoey Is More than What You See
Living with Rett Syndrome means navigating the world in a body that doesn’t always cooperate. Zoey can’t speak with words, and most of her movement is supported, but that doesn’t mean she can’t connect. Watch and listen because Zoey is always saying something. With her eyes, with her laughter, and with a personality that shows up without saying a word.
She uses an eye gaze device to communicate when she can, but a lot of the time her communication style is found in a look, a sound, a smile, and if you’re paying attention, you can tell just how much is happening in her mind.
People don’t always know what to expect when they meet Zoey. But she has a way of showing them what’s possible just by being herself. Every time she shows up and is included and given the space and grace to participate, she challenges the quiet assumptions people make about kids with complex needs.
Building Strength for What’s Next
There’s no cure for Rett Syndrome right now. But Zoey’s family watches what’s happening in the world of gene therapy, and they’re hopeful, and most importantly they’re doing their part to make sure she’s ready, physically, emotionally, and socially for if (and when) something changes. And they’re not doing it alone. Schreiber is still helping Zoey handle what she’s facing today while keeping one eye on what’s possible tomorrow.
This October, we’re honoring Zoey’s journey, and the journeys of so many children whose stories don’t follow the standard script. It might look different, but it’s still beautiful. And as long as Schreiber is here, no child will walk that path alone.
“Schreiber has been a necessity for us when it comes to being able to care for our daughter and learn about all the things that we need to know so that we’re able to provide the best life for her.”
—Matt Adair, Zoey’s dad
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