We all deserve a little self care from time to time..
Room Takeover.. I love hanging out in my sister’s room!
Nothing like a nap with my sister!
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 ifContinue reading “Peek-A-Boo”
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!”
I love her!
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.. 😋
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 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.
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”