Introducing Camden: Our Journey So Far

Camden’s story began like any other. Sara’s pregnancy and his birth went smoothly, but Camden faced challenges from the start. He struggled to eat, refusing to breastfeed or take a bottle, relying on a feeding tube, carefully placed next to our pinky finger, attached to an oral syringe. With the support of a lactation specialist, Camden eventually transitioned to breastfeeding and bottle-feeding, but every step required slow, methodical adjustments.

As first-time parents, we had little experience with other children, making it hard to see Camden’s delays. By his first birthday, it became clear he was falling behind in milestones, particularly walking (which he achieved at 20 months) and talking (still nonverbal today). Providers often dismissed his delays as typical for a boy or an only child, but they weighed heavily on us. We felt like we had failed Camden as parents, thinking we hadn’t provided him the right opportunities. The frustration and helplessness grew as we intensified our efforts, only to see minimal progress.

At 22 months, Camden’s journey took another unexpected turn when he began having seizures characterized by eyelid myoclonia. When medications failed to control them, our neurologist recommended genetic testing. After two long months, we finally got the call—Camden had SYNGAP1, a rare genetic mutation affecting brain development.

I’ll never forget the day of Camden’s diagnosis. I joined the call with Sara and the neurologist on my way to work. Hearing that Camden’s SYNGAP1 mutation was causing his brain to produce insufficient SynGAP protein was both devastating and relieving. We finally had the answer we were desperately searching for, but it came with the painful realization that any hope for normalcy was gone. As I drove, tears filled my eyes—everything made sense now: the developmental delays, the seizures, the feeding struggles. It all led back to SYNGAP1.

From that moment, we plunged into a sea of research, trying to understand what SYNGAP1 meant for Camden. The emotional burden made it hard to absorb the complex information, and we felt overwhelmed and lost. That’s when we discovered the Syngap Research Fund (SRF), which quickly became our lifeline. SRF offered more than just information; they provided community, connection, and hope. We met other parents facing similar struggles, who reached out with open hearts, sharing their stories and experiences. SRF has guided us through 

Camden’s diagnosis, helped us find resources, and gave us a plan to move forward with renewed hope.

Camden is a vibrant and joyful 2-year-old, full of energy and personality. His laughter fills the room, especially when he’s playing his guitar or watching airplanes soar overhead. Camden loves to be the center of attention and thrives on applause—he’s a natural performer who lights up when people cheer him on. His persistence is unmatched; when something doesn’t work, he finds his own way, adapting with incredible resilience. However, his inability to communicate fully can be a source of deep frustration, leading to emotional outbursts when he feels misunderstood.  Despite the difficulties, Camden’s spirit shines brightly, and he continues to bring joy to everyone around him.

Every day, I grieve for the life I had imagined for Camden—the milestones that might never be reached and the memories that will look different from what I had dreamed. But there’s also hope. SRF is pushing research forward, with promising therapeutics on the horizon. We’re not alone in this journey, and we are committed to giving Camden the best life possible.

Since Camden’s diagnosis, we’ve fought tirelessly for him—seeking therapies, advocating for his needs, and navigating a complex system that often feels like it’s working against us. The waitlists are long, and the process is slow, but we remain determined.

Camden’s journey will undoubtedly have its challenges, but we will never stop fighting for him. We’ll celebrate every victory, big or small, and surround him with love and support. SYNGAP1 doesn’t define Camden; it’s just a part of his story—a story of resilience, hope, and unwavering strength.

With love,
Craig and Sara