Our sweet Cody, AKA Coco, is 3 years old. Our journey to his diagnosis seemed so fast. His development was fairly normal. He wasn’t talking by his 2 year check up. He was also delayed in his motor skills. This is when he started therapy. March of 2022 is when he started exhibiting what we would soon discover were seizures. He was diagnosed with epilepsy in May of 2022. At that appointment, his neurologist ordered a genetic panel, and in October we received the news that he had Syngap1.
I remember feeling like it all made sense now, but the heartache I felt realizing that he was not just behind was heavy. So much fear and pain. I started to think of all the things he may never be able to do. My heart was hurting, and I felt like I couldn’t fix things for him. After the shock and pain subsided, I felt an urgency to do whatever I can to make sure he lives the best life possible. Now I tell myself that he CAN do anything! I have so much hope.
Cody has an infectious laugh. One of my favorite things is that you never quite know what will get him laughing. I will never forget the day I rolled his window down and back up in the backseat. He laughed so hard he was crying. He makes life better. The fire alarm going off in our apartment building at midnight which is ear piercing and annoying, but he is cracking up, turns the situation completely around. I’m home alone and have to kill a 6 ft centipede and I’m scared, but he cracks up laughing. It makes me laugh and I don’t feel scared anymore. He helps me in so many ways. Yes times get really hard, but I focus on the good. He will never know the many ways that he makes life better. He made me a mom, and I found my purpose. I will never stop fighting to give him the best life possible, and I will never stop hoping that we find a way to cure his condition.
We can use your help to raise awareness about SynGAP1.