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.

About the Foundation

Edwards Syndrome is 1 of more than 7,000 rare diseases affecting 25 to 30 million Americans. Edwards Syndrome, commonly known as Trisomy 18, is a rare, genetic, chromosome abnormality affecting 1 in 6,000 births. There is no cure or treatment and statistically only five to 10% of infants born with Edwards Syndrome will live to see their first birthday.

The E.WE Foundation is a 501c3 healthcare advocacy organization supporting families affected by Edwards Syndrome. Through efforts of advocacy, community education, health literacy and public policy, the E.WE Foundation is dedicated to ensuring families have access to resources and information.

To learn more, visit us online at