Posted at July 2, 2014 | By: | Categories: 14th Conference Media Center,Hope & Inspiration | 4 Comments

The Power of Bravery: My Fragile X Story

Kelley's Graduation
It was just an ordinary day with ordinary classes and ordinary people. I walked home from school that afternoon and sat in the same old squeaky, annoying, livingroom chair I sit in every day. Little did I know that day, my life as I knew it would never be the same again.

I can’t tell you the exact date or what else happened that day but I do remember that was the day I found out I had something called Fragile X…

Now what the heck does that mean to an 11 year-old girl? Nothing, I tell you. On top of hearing that news, I heard that my brother was never going to be able to talk, which is what truly made my heart drop.

School Time

Being taken out of regular school classes during test time to have “special treatment” with the occupational therapist in a separate room was no walk in the park for me. I was mortified every time I had to leave class, with everyone staring at me, as the aid walked me to a different room to see what was wrong with me.

My first few years as a teenager were tough. I had a really hard time adjusting to my life with fragile X syndrome. I thought I had some kind of disease that others were going to catch. As I got older, I thought my life was over every time I was given a test because it was difficult to memorize the material.

Before I knew it, I was breaking down every time I had to take a test or a quiz or was told to memorize something. I would always think I was being punished by not being able to do things that my friends could do, like get straight A’s or learn everything at the pace you’re suppose to learn it.

School was and continues to be a struggle. I hated trying to learn things that came so naturally to my fellow classmates. I have struggled for years but I have learned how to get by. I barely think of the times I used to sit and cry because of the way I am.

International Fragile X Conference

With friends at during the 2010 International Fragile X Conference

With friends at during the 2010 International Fragile X Conference

The 2010 National Fragile X Foundation’s (NFXF) International Fragile X Conference was an event that I truly will never ever forget. That was the year I started to take action into my own hands and learn about who I really am.

My mother, Denise Devine, and I attended the 2010 Conference in Detroit where I met some of the most amazing, loving, and, most of all, understanding kids who were just like me. The Conference had all sorts of different program tracks geared towards helping families and individuals live better lives with Fragile X. I attended a sibling session, which my mother told me to go to (even though I had no intention of leaving her side). During the session I met others just like me. My new friends and I talked for hours about our siblings, ourselves, and why we are the way we are.

I made so many friends and shared stories I had never shared with anyone before. I had the time of my life with people who got Fragile X. It was an amazing experience! I have never wanted to stay somewhere as much as I wanted to stay at that Conference and never leave! I was heartbroken when I had to say goodbye to my new friends. But, when I was up in the plane going home, I knew my life would never be the same again. I told my mother that from that day forward, I was not to miss a single NFXF International Fragile X Conference!

My Life Now

Attending Bridgewater StateAs a current college student at Bridgewater State University, I have never seen my life in a better place. I am a junior studying communications, have two steady jobs, a loving and supporting family, and a loving, caring boyfriend, who is currently serving his country in the United States Air Force.

My life at college is one that I never thought I could achieve for myself. Instead of being a scary, difficult time, it has been an experience that has made me independent, strong, and confident in the future ahead of me. I still get those feelings where I just want to break down and cry over a paper that is due the next day but I know I am so determined that I will get it done no matter what it takes. Adjusting to living on my own and with people I have never met before was a scary scenario in itself. But it turned out to be nothing but a great experience that I would choose to do over and over again.

For The Girls Out There

I will leave you one last thought: Girls out there living with Fragile X, this is going to be so tough for you. It may already be tough for you, but realize that Fragile X makes us who we are as people. Think of yourself without it… Would you be the same loving, caring, determined person you are today? I know I wouldn’t be! That’s why you should be thankful for who you are and what you will become. Because we are not contagious, we are contagious with love.

Kelley DevineKelley Devine
is a self-advocate and shares a true passion for spreading awareness and understanding of Fragile X. She is currently the communications intern at the NFXF.


  • Your story made me smile ! I work with younger children, a few who with FragileX . My dream for them would be to grow up as successful as you! You are an inspiration and I love that when times are hard you remind yourself that you can do it! Just know that your story is so reassuring to parents of younger children. Go Bears! You are in a wonderful place: both my children are students there as well . The younger of the two is spending the summer in Airforce Basic training in Texas . So with all this in comman I just had to post:)

    • thanks for your story kelley! you are brave and accomplished and a wonderful inspiration to me, my daughter, Margaux age 15 and her brother, Garrick age 12, both have fragile x syndrome. smiles.

  • Thanks for your thought and feelings. It gave me a new perspective on my almost 13 year old daughter with Fragile X. She is making progress but I always am concerned what problem may come about for her and how will she handle (or not handle) the situation. Thanks for the uplifting encouragement it will help us to push forward to advocate for her and help her to aspire to anything her heart desires!

  • I really loved your story – both of my kids have FX. My daughter is 12 and her older brother is 13. He doesn’t have all of the homework demands that she does which is hard for her. She’s maturing very nicely, and I hope she reads your story and sees the great outlook you have on life and how you’ve overcome so much! Much success to you!

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