Charlies story: Charlie was born full- term- August 2011. The only thing noted during the pregnancy was very little movement but was born without complications. Those first couple of days were rough as is typical of the newborn period- fussiness, little sleep, figuring out feedings. Soon we settled in our new routine. We noticed that he was not raising his head nor trying to roll over- our pediatrician tried to reassure us that all children were different. But I felt like something was not going as it was supposed to. I still remember tearing up at work one day, and told one of my good friends, Andi- I think something is wrong with Charlie. I quickly found a pediatrician that listened to me and contacted Early Intervention. He started EI around 5 months with a sweet soul who has been with us forever now- Ashley Dees Charlies not meeting milestones but we dont know why, we dont have a diagnosis, our insurance wont cover comprehensive genetic testing- so we go panel by panel- which was a true emotional rollercoaster- getting the test drawn and waiting on the results. We finally through the determination of Dr. Amelia Sutton received our diagnosis of GRIN2B neuro developmental disorder April 2014. She enrolled us in a study and they determined that this relatively new diagnosis was responsible for Charlies developmental delay. Well- like most of us a decade ago- I went straight to Facebook- there was nothing, no group, no informationso I started what is now known as the GRIN2B Parent Support Group- finally in the summer of 2014 another family joined and then another one. We started making connections all over the world. In 2017- some of the first families decided to start a foundation- now known as the GRIN2B Foundation. Charlie is now 13 and is total care, eats pureed foods, travels by wheelchair, requires assistance with most things. But these differences do not define him. He has an engaging laugh, is know by his awesome yoga moves, loves all things water and gross body noises. He loves his family, his big brother is his hero, loves Mama Breanna fiercely, and looks forward to spending his afternoons with Brynleigh and Amelia. He has taught all of us unconditional love, celebrating every accomplishment, and the importance of friends and family. Thank you for all of your support and love through our journeywe wouldnt be here without you!