Not Today…

Some days I am just not feeling it.. Early rises for diaper changes, virtual classes and doctor’s appointments.. sometimes I don’t want to be bothered. I’d much rather stay nestled in Mom and Dad’s bed until I’m ready to get up! Oh well.. guess I’ll get the day started..

Rare Across America

Rare Across America is a yearly event that we participate in. We talk to Members of Congress about my disease and stuff they can do to help children like me. This was our 3rd year and it was online because of COVID. Thank you to our congress people for hearing from us.