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
Panel Discussion — Gene Therapy
As gene therapies continue to enter rare disease and Fragile X spaces, we know that our community has become increasingly curious about what this means for Fragile X. At the 19th NFXF International Fragile X Conference, experts shared their thoughts on gene therapies and their future in the Fragile X world.
Brain & Behavior Study
Researchers at Purdue University are conducting a natural history research study to learn about brain activity in females, ages18-60 years, living with the FMR1 premutation.
Families for Fragile X Host Successful “Fragile X Walk”
Families for Fragile X held their first “Fragile X Walk” event on July 20 in Warwick, Rhode Island. More than 50 family members, caregivers, and the general public participated their first X Strides event.
Legislative Advocacy
The National Fragile X Foundation has been advocating for research funding and for laws and regulations sensitive to the needs of the Fragile X community, for more than 25 years.
Our 2024 NFXF Awardees
Our 2024 NFXF awards are in! Learn more about each award and the respective awardees.
2024 Industry Updates — Presentation
Three of our industry partners working on treatments for Fragile X syndrome (FXS) presented updates on their research at the 19th NFXF International Fragile X Conference on July 27, 2024. Presenters included representatives from Tetra Therapeutics, Harmony Biosciences, and Spinogenix.