Dr. Daniel Fain was the professional to finally tell us, “Your child has what we call Alternating Hemiplegia of Childhood.” It was bittersweet to hear the news. While we were relieved to finally have answers, the uncertainly and grim outlook for his future left us in shock. Sitting in the doctor’s office we were being overloaded with information telling us that he may eventually “plateau” and suddenly stop learning or progressing and that there was only one option for him to control his attacks, a non-FDA approved drug that wasn’t guaranteed to work. It was then we started the process to control the terrible disease that was taking over our child’s body.
It was heartbreaking seeing our bright, smiling, beautiful child suddenly stop speaking, tears rolling, and collapse knowing there were no answers and no way to help him.