Caydence grew up just like any other kid. We always knew she had kind of a funny smile so we brought it up at her doctor appointments, but it was always kinda dismissed as just a “quirk”.
When Caydence was 7, it was becoming obvious that her smile was disappearing. It was no longer just “quirky” so we took her back to the doctor and that’s where everything started.
We ended up with the wonderful team of neurologists at Sick Kids Hospital in Toronto who didn’t take long to diagnose her with iFSHD.
Neither her father nor I have tested positive for FSHD.
Today, Caydence is just like any other kid. She likes to run around and play with her friends. Sometimes she gets too tired, and it frustrates her but she’s always stayed positive and tough.
We live in a pretty small town in northern Ontario, so there isn’t anyone else that we know that has FSHD or even knows what it is. We giggle at school picture time when the photographer doesn’t understand why she isn’t smiling.
This is her story: