What it looks like to “come down” with Rett syndrome

People often ask when Grace “came down with” Rett. It’s not really like that…Rett is always there. I say it’s like Grace had this genetically programmed glass ceiling that would only allow her to get to a certain age before Rett pushed her back. I don’t know how scientifically accurate that is, but there ya go.

The video above is from when Grace first hit the glass ceiling of Rett. She went from being totally ‘normal’ to like this almost overnight. Her regression seemed sudden. This is what it looks like when you start losing control of your body.