“Char Bear Keeps Dancing was born out of a mother’s love, determination, and a hope for a better experience for other families receiving similar diagnoses.”
When my daughter, Charlotte, was diagnosed with infantile spasms in August of 2022, my husband Brett and I were devastated and confused. In a whirlwind of within 24 hours, we went from casually exploring a seemingly benign body movement, to being admitted to an inpatient neurology service unit. At the time, I was 8 months pregnant with our second child. My husband forced me to stay at my parent’s house nearby to sleep that night while he remained with Charlotte.
Of course, I didn't get any sleep.
I spent the entire night reading everything I possibly could related to the type of pediatric epilepsy known as “Infantile Spasms.” Reading about the unpredictable future and the possible coinciding developmental impact was terrifying. Despite working in the healthcare industry, I was struck by the fact that the information available for public consumption online was largely outdated, negative or non-existent.
The Origin Story
The “story” about Char Bear was initially written as a note in my phone with the hope to explain, at a basic level, what was going on to Charlotte’s teachers and classmates. As I connected with families, mostly moms of other IS kids through various social media platforms, it was clear that accurate and positive materials available were greatly lacking. There was little information on pediatric epilepsy, but even less on Infantile Spasms. The more I continued to learn and the more families I connected with, the more this idea grew.