ewefoundation

My Brother Graduated!

It’s been over a year since we actually attended an event. With COVID and all, we were really being careful not to be in and out of places. Me and my brothers and sister really didn’t go anywhere. Dad went to work and Mom went for groceries. I think she did a lot of pickContinue reading “My Brother Graduated!”

Me and My Mommy

I love her!

If “I told you so” was a person.

So.. I was never supposed to live, eat from a spoon, or drink from a cup.. 🤔 Not only can I drink from a cup, I can hold it all by myself. That’s all.. 😋

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 toContinue reading “About the Foundation”

Say.. Cheese!

This is me, all day, every day.. messy hair, no socks! The school asked for pictures for the yearbook. After a few snaps, this is what we got. Personally, I think it captures the real me.. 😎

Happy New Year!

Here’s to a happier 2021 for everyone! Clearly I don’t care about a photo.. I’m just here for the juice (see next pic)! Sparkling grape juice in a fancy glass!

Merry Christmas!

The entire crew! The Real Edwards, party of 7! My Mom and Dad, my big brothers, and sister! ❤.. and me! *Somebody always taking a picture.. Nope, I’m not gonna look at the camera..

My First (School) Christmas Ornament

My teacher sent Christmas activities for me! Mom was so excited! We did a picture frame using tiny wrapping paper squares. And this really cute stocking that Mom put on the tree! I was really happy to work with the art teachers one-on-one on this project.