
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
You know… I’m just chillin’.. getting rolled out to my Mom during car line pick up.. I’m cool..
That’s the post!
Today we visited kindergarten. We saw the library and lunch room. I don’t know who my teacher is but we got to visit one of the classrooms. Look at this super cool shirt I got!
Watch out Rockets, here I come!
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!