7 years old
Vienna, Virginia
Warrior #226
Our warrior, Theo, is seven years old. Today we live in Vienna, Virginia, but his journey spans continents—and is every bit as extraordinary as he is. In many ways, his story began quietly: an easy pregnancy, a smooth delivery at 39 weeks and 6 days in Dubai, where we were living at the time. But within 24 hours of his birth, everything changed. Theo wasn’t eating well, was admitted to the NICU with an infection, and our world was suddenly turned upside down. He recovered quickly, and for a while, we believed the hardest part was behind us. For a time, it was.
At four months, we began noticing delays in Theo’s gross motor development and started physical therapy for general hypotonia. We had no idea this would be the beginning of years of appointments, therapies, and specialists. Theo worked incredibly hard—just as he still does—and, step by step, learned to walk, ride an adaptive bike, and jump. But nothing came easily.
After leaving Dubai, our family relocated to Ankara, Turkey. There, we added speech and occupational therapy, and it was also where Theo had his first seizure around age two. Like many Syngapians, his symptoms emerged gradually, each new clue adding to the complex puzzle of his condition. Through it all, one thing never wavered: his remarkable spirit.
Then came the COVID-19 pandemic. Overnight, we became his therapists—reading, researching, and learning everything we could to support his physical, occupational, and speech needs, all while I navigated my pregnancy with his little brother, Nicholas.
In Turkey, we pursued our first genetic test and were told Theo had a mitochondrial disease and mutation—something he still carries, though it is not the primary cause of his symptoms. It wasn’t until we returned to the United States and began care at Children’s National that we finally received the diagnosis that tied everything together: SYNGAP1.
The diagnosis landed heavily—equal parts heartbreak and relief. As we read through the shared characteristics of other Syngapians—love of water (check), behavioral challenges (check), emotional swings (check), drop seizures (check)—it felt like reading Theo’s biography. It was frightening, yet oddly reassuring. At last, we had answers. And even more important, we had a community—people who understood, who were researching, advocating, and working tirelessly toward what comes next.
Our journey then led us to CHOP, where Theo participated in ProMMiS. That experience connected us with ABA therapy and with families who have become lifelong friends—people who will walk this path with us, every step of the way.
Life with SYNGAP1 brings challenges large and small. Theo is an extremely selective eater, making eating out difficult. He attends therapy five days a week, stretching our schedules to the limit. We spend countless hours fighting for the services he needs at school. And like many Syngapians, he doesn’t fit neatly into any box—brilliant but limited in expressive speech, impulsive but often because he’s so clever in navigating his world. Yet he brings immeasurable joy to our lives. We are better—every one of us—because he is here.
That includes his little brother, Nicholas, who proudly tells anyone who will listen that he has an older brother named Theo. He comforts Theo when he wanders into his room at night (we are fortunate—many Syngapians struggle deeply with sleep), and he is Theo’s fiercest protector. He knows Theo is sick, but he also knows he can help. When asked to give blood at this year’s conference, he agreed without hesitation “because it can help Theo get better.” Sometimes it breaks my heart that he must be so wise at only five years old, but I also know it is shaping him into a compassionate, resilient human being.
So much progress has been made—both in science and within our community—and we hold tightly to hope. Every day, we see the strength of our children, the dedication of those working to help them, and the promise of what the future could bring.
We believe in a brighter future for Theo—and for all Syngapians.
