A Fragile X Syndrome Real Life Story
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.
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.
More from the NFXF Blog
July is National Fragile X Awareness Month. To help you raise awareness in July - and all year long - we have pulled together some materials that are free to download and use, such as posters, Zoom backgrounds, coloring sheets, and more. All about Fragile X.
"These top-line data show promise for Zygel in some individuals with Fragile X syndrome. We look forward to seeing the next steps taken by Zynerba, and continue to be thankful for their thoughtful partnership and dedication to bettering the lives of those living Fragile X.” —Linda Sorensen, NFXF Executive Director
RTI International and the University of North Carolina at Chapel Hill are conducting an early intervention study to learn about the best ways to support early development in infants identified with the full mutation of Fragile X. Babies 0–9 months old with the full mutation, and their caregivers, may be eligible to participate.