Seemingly perfectly healthy baby Charlie started having seizures at 3 months old. After multiple failed medications, countless EEGs, and hospital admissions, she had her longest seizure free period of 1 month in the winter of 2016. Around that same time, Charlie stopped meeting milestones and later received genetic panel results revealing that she had a SMC1A mutation. No one knew what that meant for her. Luckily, an online group was found, consisting of families all over the world with girls just like Charlie! Turns out, there are less than 100 cases documented worldwide. All of the girls differ but the biggest commonality is the intractable epilepsy. Most of these girls, including Charlie, are nonverbal. Some of them can walk and eat by mouth, unlike Charlie. The first 3 years of Charlie’s life was filled with hospitalizations for seizures and respiratory illnesses. Unsuccessful on the ketogenic diet and a VNS surgery, epilepsy continues to be a daily struggle in the Wilson home. Despite Charlie's health condition, her family strives to give her the fullest life possible! Now, at 5 years old, Charlie’s immune system is more stable. She spends most of her time at home snuggling and playing with her baby sister, Parker. Charlie is an active member in the Kids Crew of the Epilepsy Foundation and has so much fun spreading awareness about epilepsy in her community. She also receives schoolwork to complete in her home, attends weekly therapy sessions, and has plans to participate on a special needs baseball team.