Read Trajan’s Warrior Story here.
Listen to Kari on SYNGAP1 Stories Podcast here.
In this video, Kari Imperatore shares the journey of her son Trajan, who was diagnosed with SYNGAP1 in 2024 after genetic testing to better understand his seizures. She describes Trajan as a bright, mechanically minded nine-year-old with unique passions, but also as a “classic Syngapian,” facing challenges such as epilepsy, gastrointestinal issues, profound autism, being nonverbal, sleep problems, and behavioral difficulties. Kari reflects on the “best of times and worst of times” of living with SYNGAP1—the struggles of the disease alongside the unexpected blessings of finding kindness, support, and community through Trajan’s openness to people. She highlights the critical role of the Syngap Research Fund in providing resources, shared experiences, and hope for a brighter future through research, therapies, and connections with other families.
Below is a transcript from the video:
Kari Imperatore
[00:00:00] Hi, I’m Kari Imperatore, and this is Trajan. He’s nine, and we’re here to tell you about our journey with Syngap.
Trajan was diagnosed on June 1st, 2024, while we were searching for a genetic disorder to further understand his seizures. His neurologist wanted to understand a genetic disposition for his seizures and she suggested that we test him genetically to see if there was a medicine that would be better for him, and then that’s when we found his Syngap diagnosis.
Let me tell you a little bit more about Trajan. So, as I said, he is a really, really smart little boy. And as smart little boys go, he loves some really interesting things. So he’s really mechanically minded. And he loves some really out-of-the-box things. He loves outboard engines. He loves fans. He loves anything that can go fast. So think wheels, motorcycles, and anything that can go, go, go.
I often call Syngap, the best of times and then the worst of times. Because it is hard. It is a hard, hard disease. Even one aspect of Syngap is debilitating for a parent. And Trajan is a classic Syngapian. He has GI issues. He has seizures. He’s nonverbal. He has profound autism. He has trouble transitioning from one place to another. He has sleep issues at times. And then he has trouble with when he’s told no. And it is also the best of times because he has the snack of finding the best people. He just is drawn to amazing people and he has opened my eyes to a world that I would have never found, without having a special needs kiddo. So I call Syngap the best of times and the worst of times because it has brought me so much hope that there’s amazing and good people in this world because I find them because of Trajan. Because unfortunately, I need to rely on good people because I need their help. Because Trajan finds them. Because he has no bubble and will seek them out as well.
So to have a foundation like SRF to help, to bring resources, literature, and other parents’ expectations, and assistance, and what helped and what didn’t help is uplifting and and enlightening, and it makes all of the difference to raising a kiddo with Syngap. And it is just something that I just want to say thank you for.
Thank you to SRF, and thank you to all of the parents that have provided just any insights to other parents that have gone through this journey. We also found a group of people, like SRF, that were looking for a better way of life for Trajan through drug trials and therapies for a better hope for his future.