A Fragile X Syndrome Real Life Story

Riley in front of the U.S. Space & Rocket Center, Huntsville, Alabama.

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, seated, shaking hands with astronaut Mark Vande Hei at space camp.

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.

Army Astronaut Col. Mark T. Vande Hei, U.S. Army Space and Missile Defense Command/Army Forces Strategic Command NASA Detachment, officially retired from the Army Aug. 31 after serving more than 27 years as an Army engineer and astronaut. (Photo Credit: NASA photo)

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)

Dear Reader

We hope you find this resource helpful in your own Fragile X journey. A key part of our mission is to provide helpful resources to families, caregivers, educators, and clinicians to better provide for this living with Fragile X. Our website is the top way we deliver our resources. In fact, 350,000 people/year use our website to learn more about Fragile X.

All of these resources are provided free-of-charge. We don’t have a membership or subscription fee. We rely on donors like you to make all of this possible.

Will you consider a donation today? Your donation will help us to provide more resources, update resources, and reach more families. Your donation will help a family with their next struggle, challenge, or hurdle. You can donate securely online: https://give.fragilex.org.

Thank you in advance.

More from the NFXF Blog

Marner Family Hosts 4th Annual QC Fragile X Golf Outing

Sep 29, 2023|Comments Off on Marner Family Hosts 4th Annual QC Fragile X Golf Outing

The annual QC Fragile X golf outing, hosted by the Marner family, has been an incredibly inspiring demonstration of support. Thank you Andrea and Kevin - and your many supporters over the past four years!

NFXF Webinar: 2023 Industry Updates

Sep 27, 2023|Comments Off on NFXF Webinar: 2023 Industry Updates

The NFXF hosted a Fragile X research updates webinar with three of our industry partners working on treatments for Fragile X syndrome. Each shared the most up-to-date information on their research project(s) in a way that is understood by those who aren’t steeped in drug research day in and day out. A short Q&A followed each presentation.