When Beckett was 4 months old, I noticed he was not meeting the same milestones as his twin sister Pyper. Soon after, while I observed Pyper continuing to meet her milestones, Beckett fell further behind. Thus,the journey to find answers to help my son began. After many doctors appointments and extensive testing, we finally had an answer when Beckett was diagnosed with SYNGAP1. At the time of Beckett’s diagnosis, SYNGAP1 was so rare, no one knew anything about his condition. I didn’t know there were others out there like him. This was truly the loneliest and most helpless time in my life... having a child with a very rare disorder and very little information about SYNGAP1.
I became very discouraged by the lack of information about her Beckett's diagnosis. The lack of information and availability of help led me to start Bridge the Gap as a way of connecting with and helping other families. I just knew there had to be more families and information somewhere. If not, I was determined to find other families with a child like Beckett and build what was needed to help them have a better life.
Monica and Bridge the Gap have gone on to help other families affected by the rare disease. The organization raises awareness about the disease, and raises funds and coordinates with researchers to accelerate research efforts to find treatments for SYNGAP1.
While, in the beginning I felt uncertain, I now have a positive outlook when it comes what the future holds for Beckett and other SYNGAP1 patients. Through hard work and perseverance, I now have hope that Beckett and our SYNGAP1 patient community will have an opportunity to achieve their highest possible level of independence and best quality of life. Most of all, I just want Beckett and others affected SYNGAP1 to be happy!