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

  • 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
  • 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
  • When our family began our journey in the Fragile X world in 1991, I could not say that I had a lot of hope for our two boys’ future. Everything was so full of uncertainty. Questions surrounded our family’s life and what the future would hold. If I had completely given into doubt, I would have lost momentum toward attaining any kind of hope. » FULL ARTICLE

    Posted on July 18, 2012 | Categories : Hope & Inspiration | 6 Comments