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
In this webinar, we learned how to leave money and other assets for the benefit of a child with special needs without causing the child to lose important public benefitsl, including understanding the difference between a payback special needs trust and a third party discretionary trust. ABLE accounts and benefits, such as SSI and Medicaid, were also discussed.
This survey will help support families in the Early Check study in NC whose newborns have been diagnosed with Fragile X and inform the design of an early intervention program for these babies.
RTI Int’l and UNC at Chapel Hill are conducting a research study to learn more about early development of young children with Fragile X in North Carolina, and the experiences of their parents when obtaining the diagnosis and early intervention services.