Emanuel Syndrome Awareness

By now, most people know of our sweet earth angel Evyn Grace and her journey with Emanuel Syndrome. For anyone not familiar with Emanuel Syndrome, it is a chromosomal disorder that disrupts normal development and affects many parts of the body. Those diagnosed with ES have the presence of an extra small chromosome made up of pieces 11 & 22. Evyn’s first year was incredibly difficult. Watching your child struggle with their health as well as development, practically living in doctor and therapy offices, is very isolating. Sharing our story has also been very therapeutic for me. And while so many kids with ES are significantly delayed and have several obstacles to overcome, they are a daily reminder of love and strength.

Evyn is now four and has surpassed any expectations that we ever had. She started school this year in the PANDA program in our district, and it has been fantastic for her. She loves nothing more than to play with other kids her age. She has made several friends, and is loved throughout the program. She is working hard on her communication, although she is VERY clear about what she wants and doesn’t want at home.  She has also learned to “booty” scoot around the house and hasn’t looked back since. We knew that once she figured out how to move around we wouldn’t be able to keep up with her. She truly is our families SUNSHINE. 

This year we want to do things a bit differently. Those that sign up for the race, receive a t-shirt. We ask that you wear it on 11/22 in support of our babygirl and all of the other children and adults living with Emanuel Syndrome. We want to focus on the importance of inclusion within the homes, classrooms, playgrounds, etc. Talking about disabilities, reading books, having representative toys, and asking questions when you don’t know. These are just some of the ways that you can support us. 

Emanuel Syndrome Day means many things for us. It signifies love, courage, bravery, and most of all, HOPE! My goal with this 5K is to continue to bring awareness around our community for children of all disabilities. 

We ask that you wear purple and/or blue (or your shirt if you received one) during your race as well as on Emanuel Syndrome Day 11/22 to show your support. We’d also love for you to post pictures and tag us (@jupton8 & @ashley0021) to help raise awareness. 

Suggested Hashtags: #emanuelsyndrome, #emanuelsyndromeawareness, #emanuelsyndromeawarenessday