Author Archives: ewefoundation

There’s a really nice man who makes these standers for children who have trouble walking and standing on their own. The goal is to help with core and leg strength. Because I’m so little, our PT had to cut pool noodles in half to give me extra side support. The black straps [across the back]Continue reading “TAKING A STAND”

I got my first pair of AFO’s, ankle-foot orthosis (a few months ago). My physical therapist at Children’s Hospital of Alabama casted my legs and feet to get a mold measurement for my custom shoes. We could choose a one color print, or a design print with cartoons, superheros, or a sports team. We wentContinue reading “THE AFO”

My brother [Jeremiah] saw blood on my hands, jaw, and chair. I was chewing on my finger at the time. Mom came, rinsed out my mouth, then realized I had a loose tooth. I’ve been to the dentist before. We learned then that my teeth were different. They are discolored, kind of orange tinted; andContinue reading “LOST TOOTH”

COVID-19 has taken over the world! We have been quarantined since March 13. My brothers and sister are doing school work at home. Even my big brother is home from college. It’s fun having everyone home but it’s not so fun being on lock down.. The recommendations are to hand wash, be socially distant, andContinue reading “COVID-19”

It’s my birthday! Just 3 short years ago, my Mom and Dad were faced with doctors saying I would pass away soon. I turned 3 years old on Saturday, March 28. We celebrated at home with cinnamon rolls.

I was born with Bilateral Cleft Lip and Palate. I wasn’t even a year old and I was prepping for surgery #3. This surgery was to close my cleft lip. Surgery was scheduled at Children’s Hospital of Alabama. We planned for 2 days; we were there 4. Everything went exactly like my doctor said itContinue reading “BILATERAL CLEFT LIP”

My mom was induced at 39 weeks. The doctors didn’t even think we’d make it that far. We got to the hospital Monday morning, March 27. Mom was prepped and taken to a room. They gave her medicine and started an IV. After 16½ hours I was born early Tuesday morning, March 28. There wasContinue reading “BORN DAY”

I’ve had 5 surgeries and I’m only 2½ years old. I had my first surgery when I was about 7 months old. I was born with bilateral cleft lip and palate; and the only way to close it is by having surgery; a lot of them. The first doctor we saw said he could closeContinue reading “5 SURGERIES BEFORE 2”

Mom and Dad found out about me in the Summer 2016. Half way into the pregnancy, the doctors said I had Trisomy 18. They said it was 99% accurate too. I would be severely delayed, have a bunch of health issues, and would probably die. Mom was scared. Dad was strong. My brothers and sistersContinue reading “THE BEGINNING”

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 Follow our journey on social media!