Welcome to our STORY HUB
A place where personal journeys and professional insights come together like pages in a shared book. Here, families, individuals, and experts contribute experiences, guidance, and wisdom, empowering each of us to become authors of our collective future. Through heartfelt narratives and practical knowledge, we discover hope, build understanding, and find our place in this evolving story
“When we first sat in the genetics specialist’s office, I remember the doctor’s tone as she explained that our son might never fully engage in organized sports. The words felt heavy, as if a door was closing before he could even try. We left with our hearts aching, wondering how we’d help him find his place in a world where “team” seemed out of reach.
But son had a different story to tell. He discovered his passion he decided to join community hockey when he was in kindergarten. Drawn by the rhythm and excitement, he would sway back and forth, smiling whenever a goal was scored. When we found him a special jersey, his very own team colours, something clicked. Suddenly, that simple piece of clothing became more than fabric. He wore it proudly, as if it were his voice.
In time, the community hockey team welcomed him. He skated alongside practices, passing the puck, and smiling ear to ear. Without speaking a word, the jersey did the talking. Other parents recognized him, greeted him warmly, and asked how he was doing. Coaches gave him high-fives, and kids learned to celebrate his presence. Through these small gestures, our son communicated who he was: a joyful, sports-loving boy eager to belong.
Our once isolated family discovered that the community itself was our sons team patient, supportive, and open-hearted. Each practice and game strengthened our bond, showing us that belonging thrives where understanding and encouragement unfold. Our son may not play traditionally, but he’s very much part of the team.”
Abilities can bloom where we least expect them, and sometimes a single jersey can communicate what words cannot. In an understanding community that values every contribution, differences turn into strengths, and every child finds their place on the team.
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At 24 years of age I had graduated from university, had a job teaching high school biology, was married and had a son. That scenario is mostly gone from the generations that came afterwards. Couples in recent decades have foregone having children in favour of extended education, travel, and wealth building so that when a couple begins to think about pregnancy they are often in their 30’s. By that time some women find difficulty in becoming pregnant. Our daughter was one such individual. She had been seen by an OBGYN (obstetrician and gynecologist) for a few years but only when a friend on Facebook posted a story about her experience with a child with FXS did our daughter look into FX, something she, and the OBGYN, had never heard of. If the Fragile X gene has too many repeats a child can be born with FXS. But when there are fewer numbers of repeats the condition is one of Premutation. One of the several issues related to the Premutation is premature ovarian failure (FXPOI) when in their early 30’s the ovaries begin to shut down. Our daughter tested positive for Fragile X Premutation.
This issue was resolved by our daughter and her husband through IVF. (as an aside, I recommend the movie “JOY” on Netflix) We had easy access to testing so my wife and I and then several in the extended family on my wife’s side were tested. It appears that my wife’s mother who had two sisters, all were Premutation carriers. So many of the tested cousins are also carriers and this goes down to grandchildren as well. But most are aware of this and in the case of FXPOI the women can harvest eggs before POI takes effect. And all are aware of this mostly unknown mutation so that choices can be made. .”
— Joel, Proud Parent and Advocate
Through one person’s journey of discovery and testing, an entire extended family gained the knowledge needed to make informed choices about their reproductive health and future. Advocacy begins with sharing experiences, breaking the silence around little, known conditions, and ensuring that others have access to the information and resources they need.
Stories have the power to inspire, connect, and create change. In our Story Hub, we celebrate the lived experiences of families, individuals, and professionals impacted by Fragile X. Because storybooks are just as powerful as textbooks, we invite you to share your story—your challenges, triumphs, and words of wisdom. By sharing your voice with us, you can help others feel less alone and become part of a growing tapestry of resilience and hope.
Have a story to tell? We’d love to hear from you! Submit your story today and join us in writing the next chapter together.