1 year old
New York
Warrior #237
Meet Matteo, our happiest little warrior.
Matteo is our firstborn son, a bright-eyed, sweet baby who is almost always smiling. He arrived exactly on his due date, and from the moment we met him, we fell completely in love. From the beginning, Matteo has been calm, curious, and incredibly observant. He has always seemed to take in everything around him, quietly studying the people and world with those big, brown eyes.
When Matteo was just one month old, we learned that he had a tethered spinal cord. What followed was a whirlwind of specialists, imaging, tests, and decisions we never imagined we’d be making so early in his life. At three months old, Matteo underwent surgery to repair it and spent three days in the PICU.
Just a few weeks later, everything shifted again. Through the GUARDIAN newborn screening study, we learned that Matteo had a mutation in the SYNGAP1 gene, a condition we had never heard of, and something completely unrelated to the tethered spinal cord that we were already dealing with. Suddenly, we were trying to understand a diagnosis that came with more questions than answers and a future we couldn’t predict. Unlike many SYNGAP families, we were given the gift of knowing early. And while that knowledge brought a tremendous amount of uncertainty, it also gave us something incredibly valuable: time.
Time to learn about SYNGAP1. Time to educate ourselves. Time to find doctors, therapists, researchers, and other families who could help guide us. Time to support Matteo’s development before we even knew what challenges might come.
And the SYNGAP community became a huge part of that. We found parents who understood things we were still trying to put into words. They helped us know what questions to ask, what to watch for, and how to advocate for Matteo. When his nystagmus and strabismus appeared seemingly overnight at six months old, it was the SYNGAP community that helped us understand how important it was to pay attention to his vision and advocate for him early. When it came time to navigate Early Intervention and all of the therapies Matteo could benefit from, they helped us understand what was available and how to fight for the support he deserved. We have leaned on this community in ways we never could have imagined, and we are so grateful for the families who have walked ahead of us and reached back to help us along the way.
And Matteo is working hard, too. He is growing, learning, and finding his own way forward. We celebrate every new movement, every new sound, every little moment when something clicks. We don’t take any of it for granted. At one-year-old, he is rolling over, sitting independently, pulling to stand, and just about to take off crawling.
Despite all of this, we have found that there is a unique kind of grief in loving your child exactly as he is while letting go of the ease you once assumed would come with parenthood and the life you imagined for your son. Sometimes, things become scary when doctors and therapists talk about helping him “live to his fullest potential,” because as his parents, we don’t see invisible limits already placed on him. We see Matteo.
There were moments when that grief felt overwhelming, when we didn’t know how to make sense of everything that had changed. But Matteo has taught us to stay in the present. Because no one knows what the future holds for their child. We certainly don’t. SYNGAP1 has given us plenty of uncertainty, and there are still so many questions we cannot answer. What we do know is that today, Matteo is happy. He is curious. He is social. He is determined. He is surrounded by people who love him and a community that believes in him.
And perhaps most importantly, we have time. Time to be present. Time to learn. Time to advocate. Time to give him every opportunity we can. Time to celebrate exactly who he is, rather than living too far ahead in a future we cannot see. That time has been a gift.
This has been the hardest and most beautiful year of our lives. It has changed the way we see uncertainty, progress, and all of the ordinary moments we once took for granted. And that’s what we think of when we call Matteo our little warrior. Not because of everything he’s been through. Not because of what we think he may overcome. But because of who he is. Our happiest little boy, meeting the world with so much curiosity and joy.
Looking back on this first year, the thing we would tell ourselves is simple: stay grounded in the present. We don’t need to live in the future or spend our days worrying about challenges that may or may not come. We need to keep showing up for Matteo, keep advocating for him, keep giving him every opportunity we can, and keep fighting for a cure for SYNGAP1.
For now, we have today. And we have time. And we couldn’t be more grateful for either.
Editor’s note: We at CURE SYNGAP respect the family’s wishes to keep Matteo’s face private.
