Peek-A-Boo

Doctor appointment shenanigans! I was being silly while we waited for the Orthopedic doctor to come in the room.

I had an ultrasound on my stomach and a xray. They showed a new symptom called hip dysplasia that we just found out about but I’ve had it since birth. The doctor asked my mom if I had Trisomy 18 and said he didn’t think we needed to do anything.

I heard mom tell dad, “I knew when he asked me if Elijah has Trisomy 18 he wasn’t going to do anything”. You wanna know the funny thing? I knew it too.

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 pick up so she didn’t have to go inside.

I know a lot of people miss seeing us but we have to be careful because of, well.. me. I have a brother with asthma who my mom & dad wanted to protect too. But, they really didn’t want me to get sick.

My biggest brother graduated college in May. We were happy it was outside because we really wanted to go. It was a 4 hour drive and for May, it was really chilly. I had my wheels and a new canopy thing to snap on the top. I was pretty fly for a kid in a wheelchair!

We had fun! On the way back home, we stopped and saw some family. We did the drive by thing though because we’re still social distancing but at least we stopped by.

This is a picture of us at the end of the program. We took our masks off just for the picture. Well, I never had on one.. I don’t like them, I won’t keep it on 😋.

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 http://www.theewefoundation.org.