Fragile X Stories of Hope & Inspiration

Below you will find personal stories of Hope & Inspiration written from some of the strong and distinctive voices within the Fragile X community. Our goal is to continue to provide readers with stories that not only inspire but also inform and educate—sometimes with poignant, uplifting tales and other times with helpful tips and lessons about all facets of Fragile X-associated Disorders. Our writers will come from all walks of life: parents, grandparents, mothers, fathers, self-advocates, siblings. These stories inspire us at the NFXF to continue fostering the awareness that has done so much to lift up this uncommonly dedicated and involved community.

Please come back often, as we will continue to update this site with more posts.

Latest Hope & Inspiration Stories

  • “Hey” was one of my son Ian’s first words, and what he quickly learned was that whomever he said that to responded — with something. Usually it was with a smile and friendly tone to their voice, and you know how quickly our children pick up on that positive feeling. » FULL ARTICLE

    Posted on October 15, 2014 | Categories : Hope & Inspiration | 1 Comment
  • Reposted from NFXF Quarterly, President’s Note, Issue #44, March 2012 How did I wind up here? Eight short years ago I had never heard of Fragile X, let alone CGG repeats, carriers, and mGluR theory. As I settle (humbly) into my term as President of the Board of Directors of the National Fragile X Foundation, I find myself spending considerable time thinking of how all of those fit together— not to mention how I got here. The short answer is simple: Christy and Kenney…the two Daddy’s girls in my life living with Fragile... » FULL ARTICLE

    Posted on October 1, 2014 | Categories : Hope & Inspiration | 0 Comment
  • Taylor was born September 6, 2003. She was perfect. She met all her milestones right on time, spoke early, and knew complicated shapes like a pentagon before she even could speak. Taylor was, however, very shy in the presence of new people. She would get so excited at the littlest things and flap her hands very fast. We thought she'd be a terrific drummer! Taylor never liked praise and would cry if you congratulated her too loudly. All around, though, we never suspected anything was wrong. ... » FULL ARTICLE

    Posted on July 28, 2014 | Categories : Hope & Inspiration | 0 Comment
  • Throughout his life, Pat has experienced many transitions. It started with his transition out of the early intervention program into preschool, then onto elementary school and into his collaborative program. After that, he transitioned to a special school program and onto an adult day program. When Pat is involved in a transition it is almost always planned. When it comes to introducing Pat into a new setting or meeting new people, we usually try to ease him into it by allowing time for “trial days” in new programs. In High... » FULL ARTICLE

    Posted on July 3, 2014 | Categories : Hope & Inspiration | 1 Comment
  • In our world of parenting a child with special needs, all you have to do is say “Holland” and everyone knows you are dealing with challenging days and lost dreams. As Emily Perl Kingsley expressed in her famous poem, having a child with special needs is like planning a trip to Italy only to land in Holland. There is a new language, new places to visit, and new people to meet. Everything is different, but that does not mean it’s bad. It has taken me a long time... » FULL ARTICLE

    Posted on July 3, 2014 | Categories : Awareness Day,Hope & Inspiration | 1 Comment
  • 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. » FULL ARTICLE

    Posted on July 2, 2014 | Categories : 14th Conference Media Center,Hope & Inspiration | 4 Comments
  • "The results of genetic analysis confirm the diagnosis of fragile X syndrome, " said the pediatrician. Years later, those words still bring me to tears. We are blessed with two sons, Nathan, 29, and Jason, 24, who both have fragile X syndrome. For those of you who have never heard of fragile X syndrome, it is the most common cause of inherited intellectual disability and the most common known genetic cause of autism. » FULL ARTICLE

    Posted on July 1, 2014 | Categories : 14th Conference Media Center,Hope & Inspiration | 1 Comment
  • Our only child, Kenny, was diagnosed with fragile X syndrome (FXS) at the age of four. When this happened our family was not only at a loss for words, but at a loss for what we could do for our son and for his future. Having our first child meant the world to my husband, Anthony, and me. We were ready to do as much as we could for our child, but, when we noticed Kenny was not meeting his milestones we didn’t know what to do. That’s when my mother-in-law, Esther Torres, suggested we double-check with our pediatrician » FULL ARTICLE

    Posted on June 30, 2014 | Categories : 14th Conference Media Center,Hope & Inspiration | 0 Comment
  • In Girl Scouts, there are three different awards you can receive, Bronze, Silver, and Gold. As a member of Girl Scouting, I have received all three awards. The one I feel most proud of is my Gold Award because what I did to earn that award made a real difference to my brother and to my community. I received that award because I organized a “Spread the Word to End the Word” day at my high school, Hopkins Academy. » FULL ARTICLE

    Posted on June 23, 2014 | Categories : Hope & Inspiration | 0 Comment
  • As I contemplated the end of the I decided to list the accomplishments and changes that we have witnessed in our son, Dan, since its inception two years and nine months ago. The first time we experienced a change in Dan was at his brother Bob's wedding. Even though we practiced repeatedly, we expected, and we were accepting of, any mumbling of congratulations followed by looking away with his face leaning on his shoulder to escape any eye contact that Dan could muster.... » FULL ARTICLE

    Posted on June 13, 2014 | Categories : Hope & Inspiration,Novartis AFQ056 | 7 Comments
  • One of the many things I wasn’t ready for as a parent — and then again as a special needs parent — is how true the clichés are. I’ve lost track of how many people tell me about studies that say growing up with a special needs sibling will make my other children kinder, more sensitive, and all around more wonderful people. I think it’s probably true but that doesn’t help get us through the day. Although there are moments. » FULL ARTICLE

    Posted on May 27, 2014 | Categories : Hope & Inspiration | 5 Comments
  • “How in the world will we raise our developmentally disabled kids that get so overwhelmed by almost everything? Will they have to live with us forever? Will life ever calm down? Will they ever be able to hold down a job or live independently? We have no idea how to parent kids with special needs! We have never even known anyone with special needs kids!” That was how my husband, Neal, and I felt after our girls were both diagnosed with the full mutation of fragile X syndrome when they were just... » FULL ARTICLE

    Posted on May 23, 2014 | Categories : Hope & Inspiration | 12 Comments
  • My whole marriage to my husband Vince can be described by one acronym: FXTAS. Our wedding was in April 1999. It was a second marriage for us both, and we weren’t youngsters (I was 48 and Vince was 64), but I thought we were both healthy. We had no inkling that Vince’s mind was already deteriorating from FXTAS. » FULL ARTICLE

    Posted on November 20, 2013 | Categories : FXTAS,Hope & Inspiration | 12 Comments
  • It’s hard to believe that it has been more than nine years since Parker and Allison were diagnosed with fragile X syndrome. It’s harder to believe that there was a time when my family and friends didn’t know what FXS or a Fragile X-associated Disorder was—and neither did I. It’s hard to remember what it felt like to be completely unaware of this amazing world that we are now a part of. Don’t get me wrong, there will always be a part of me that wishes I had no reason to know. But I do know. I know the » FULL ARTICLE

    Posted on July 18, 2012 | Categories : Hope & Inspiration | 18 Comments
  • When I was pregnant with my son I had many visions of our future. I envisioned watching him learn to walk and talk, hearing him say "I love you" for the first time, teaching him to read, and reading books from my childhood to him. I envisioned standing at a bus stop holding his hand on the first day of kindergarten. I envisioned sleepovers. I envisioned my husband teaching him to drive a car. I envisioned nagging him about his long hair or dirty room. I envisioned watching him graduate from high school and college. I envisioned him getting married. » FULL ARTICLE

    Posted on July 18, 2012 | Categories : Hope & Inspiration | 14 Comments
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