Our sweet Brady is 2 years old and lives in Hudsonville, Michigan! He loves snuggles, chasing his brothers around, jumping on the trampoline, balls, popper toys, bubbles, going bye-bye, and listening to us sing. He is so easy to love and is such a bright light in our family!
My husband, West, and I have four children. Three boys and a girl who are 5, 4, 2 and 3 months old. We just received his Syngap1 diagnosis in May of 2023. We started noticing his delays around 6 months old. He wasn't hitting milestones so he started getting involved in physical therapy, occupational therapy and speech therapy. He has always been a mystery and no one was able to put a finger on what could be going on with Brady. We just did our best to treat his symptoms.
It was a long 2 years of treating his symptoms but not knowing the root cause. As a parent, you want to know your child through and through. Every day I would squish my face against his soft cheeks and stare at him from an inch away. How could I be so close to him but feel so far away? So at a loss of what was going on with my child. I fumbled through telling friends and family what he was going through with no name for it. I kept hearing, "He will catch up." "All will be fine." My mother's heart knew differently, I knew something was not right.
At the beginning of 2023, I started noticing Brady space out and go limp for a spilt second at a time. I assumed it was his poor balance or low muscle tone. It got worse very suddenly in April and overnight he was dropping to the ground every 10 minutes. We took him immediately to the hospital where he stayed for a few days hooked up to an EEG. They noticed right away he had been having multiple types of seizures at once. They gave him an epilepsy panel DNA test and we found out he was positive for SYNGAP1. Finally an answer! Little did I know when I read that strange word I'd never heard of before, it would unlock a whole community of families who fiercely love their children and are fighting so hard for a cure. This community has been such a light and game changer to our journey, filled with such love, compassion and kindness.
Brady has only been moving forward and progressing through each challenge he has faced. He is walking and starting to learn how to navigate through the world around him. We are working on communication now and hope to find a good way for him to express his needs. God has always carried Brady through everything and will continue to do so! We have full faith, first and foremost, in His maker to lead him gently down the path He has planned for him to live. We hope to fill his life with the most love, joy and support as possible!