A Fragile X Syndrome Real Life Story
Riley standing in front of the U.S. Space & Rocket Center, Huntsville, Alabama.
By Riley’s Mom
I would like you to meet my wonderful son Riley Lynch. Riley is 10 years old, a wonderful student, and was born with Fragile X.
From the day Riley was born, we knew he was different—and special.
My husband and I were told he would never walk, talk, or do much of anything. One doctor went so far as to say he wasn’t even going to live. My husband and I ignored all the comments and continued to advocate for Riley, and to make sure he is always given the same opportunities every child deserves.
Riley meets astronaut Mark Vande Hei at space camp.
This past summer, Riley sent in a video as his application for space camp. His dream is to become an astronaut. We must own at least 40 books on astronauts and space! The day came and the directors called; not only was he accepted, we were overwhelmed to find out he was chosen to meet a real life astronaut—Mark Vande Hei!!!
When they met, Riley could not take his eyes off of him while he talked about his mission to space. I was sitting in the corner, tearing up while watching my son realize that this was something he could do. His entire space camp family was so loving and encouraging, he still has not stopped talking about going to the moon! It was an experience he will remember for the rest of his life.
So, for anyone who labels kids like Riley or puts limitations on them: You never know what will happen tomorrow. Every day our son teaches us and the people around him that you never know what you can do unless you try. He has already started to leave his mark on this world, and we could not be any more proud to be his parents.
Riley, someday we’re going to look up in the sky and see you waving from the moon. Keep chasing your dreams. You will make them happen, you always do. We love you.
Who is Mark Vande Hei?
Though Riley knows who Mr. Vande Hei is, you may not. It’s no wonder Riley was awestruck when he met him, Army Astronaut Col. Mark T. Vande Hei, U.S. Army Space and Missile Defense Command/Army Forces Strategic Command NASA Detachment, (whew, that’s long) retired from the U.S. Army in 2016, and one of the quotes in his retirement press release goes right along with Riley’s mothers words here:
When you get the opportunity to do something hard, even if it means that you’ll risk failure, go for it. If you fail, figure out what you should change and try again.
We couldn’t have said it better. For more about Mr. Vande Hei, see his U.S. Army retirement press release, and check out his Wikipedia page. (Photo Credit: NASA photo)
More from the NFXF Blog
Hope for the Future – Adult Resources
Learn how we are equipping families with resources needed to plan for the future with confidence, while we continue to work towards treatments for Fragile X.
Hope for the Future – Expanding Clinical Care
Learn how we are expanding our network of Fragile X clinics to better support individuals living with the Fragile X premutation.
Navigating Challenging Behaviors — Webinar
Tracy Stackhouse, MA, OTR/L, Lauren Moskowitz, PhD, Jennifer Epstein, PsyD, and Missy Zolecki joined us for a one-hour Q & A discussing Navigating Challenging Behaviors.
Messages of Gratitude — Video
When we take a moment to reflect on what means the most to us in this season of gratitude and joy, the Fragile X community tops the list.
Hope for the Future – NFXF Belonging Grant
Our NFXF Belonging Grant is already making an impact. Learn how we're expanding this program to reach even more families impacted by Fragile X!
Hope for the Future – Find Our People — Video Slideshow
We're on a mission to find and support EVERY family living with Fragile X