
Hi! My name is Elijah Wayne Edwards. Some call me E.WE. Today, I am 4 years old. I have a rare, genetic, chromosome abnormality called Edwards Syndrome. This is my Full Trisomy 18 journey!
MY FAMILY





MY JOURNEY


















A Healthcare Advocacy Organization
Playgrounds for kids like me are important because I want to play too!
I turned 5 years old! That’s it. That’s the post.. Happy Birthday to me! 🥳
So, today I did a thing.. I crawled. That’s all.
I have been home with Mom the past 2 days because I wasn’t feeling good. My ear is draining and my nose is runny. I had a little fever too so we saw the doctor. The doctor did a test for COVID and flu – I didn’t like it. They put this stick thing up my nose, two times! Both of my test were negative but they said I have upper respiratory infection. I have 2 medicines that I have to take a a lot of days.
It stinks but at least I can stay home with Mom!
I got a new play area! I started rolling all over the place! I can sit up by myself and I can get on my hands and knees and not fall. My Mom got me this really big “playpen” – I say play area because playpen sounds like it’s for a baby – so I can move and not bump into stuff. It’s big enough for my sister and brothers to take turns and get in with me.
I love it!
Happy 2022! A few days after the new year I was admitted to the hospital. I had to have a lot of procedures and I couldn’t eat any foods. I was there 4 days! I’m not sure if I was scared because my Mom was there too. My Dad was at home with my brothers and sister.
Everyone was nice to me. I cried a little bit but I’m still a big boy. I’m glad it’s over!
We made Christmas ornaments at school! This was my first time making an ornament with my friends in the classroom! My sister helped me hang it on our tree!
I know I’m late.. things have been busy! We had a trunk ‘o treat at school for Halloween! The trunk of my Mom’s truck was decorated like a spooky train station. There were skeletons, witches, ghosts, and spiderwebs! And, she had a working train that played when me and my friends stopped by. It was really fun and I got a lot of candy!
When your sister is tired of wiping your nose…
The change in the weather has my sinuses and allergies all over the place. From sneezing and runny nose – to – stuffy nose and congestion..
I’ll be glad when it’s over!
Sound check.. Elijah live on set..