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 were filled with hospitalizations for seizures and respiratory illnesses. Unsuccessful on the ketogenic diet and a VNS surgery, epilepsy was a daily struggle in the Wilson home. Despite Charlie's health condition, her family strove to give her the fullest life possible. Two months shy of her 9th birthday, Charlie left behind a family who will go above and beyond to carry out her legacy and keep her memory shining bright. In her 8 short years, she managed to touch the lives of everyone she encountered in countless ways-from her books, to the inclusive egg hunts and fall festivals she inspired. Because of Charlie...many other children went for their first day of school with "a voice" in their backpack, in the form of "Charlie Mae's First Day". Because of Charlie...many of her local friends rode on a hayride for the first time and were able to hunt and pick up Easter eggs like never before. Because of Charlie...her family knows how to appreciate the smallest blessings in life and values every last second they have together on this earth. Charlie also helped raise thousands of dollars for the Epilepsy Foundation of America through fundraisers she held or inspired. She enjoyed spreading awareness for epilepsy in her own special way and even helped to pass Seizure Safe Schools legislation in Alabama. May Charlie continue to inspire others through her life story and books that will live on forever.
Videos
Q & A
Question and answer about Charlie Mae's First Day for a !st grade class.
Egg-stra Special Egg Hunt
First egg hunt with adaptive glove tutorial.
2nd Annual Egg-stra Special Egg Hunt
A beautiful day of inclusive fun. Video made by Austin Jones who captured the day perfectly.
A Very Special Fall Festival
A video with lots of ideas to make your fall gatherings inclusive.