Bowen's
Story

Fragile X Syndrome is more than just a genetic condition; it's a challenge that impacts families, communities, and futures. Our work is dedicated to understanding its complexities and finding therapies that can transform lives, offering hope for a future free from the limitations of this disorder."

Dr. Emily Chen,

Geneticist and Fragile X Researcher

Bowen's
Story

When Bowen was first diagnosed with Fragile X Syndrome, our world shifted overnight. The early years were filled with uncertainty, new routines, new specialists, and new fears. Yet through that uncertainty came something far more powerful: clarity about what truly matters.

Today, Bowen is approaching his fifth birthday, and with it, a new chapter full of growth, joy, and resilience.

This winter marks his fourth ski season, and it’s hard to put into words what it felt like watching him come off the harness last year — skiing completely on his own.

His determination on the hill mirrors how he approaches life: fearless, focused, and full of quiet confidence. This season, we hope to see him join ski programs where he’ll be surrounded by peers his age, continuing to learn, laugh, and connect.

1 Million People in the US Affected

Approximately 1 million people in the United States are estimated to be affected by Fragile X Syndrome, either directly or through family members, as carriers.

1 in 4,000 Males

Are diagnosed with Fragile X Syndrome worldwide

1 in 8,000 Females

Are diagnosed with Fragile X Syndrome worldwide

Bowen's
Story
Continued

Bowen’s progress in speech has also been incredible. His vocabulary is growing, and hearing him say the names of the people who love him most — family, teachers, and friends — fills every day with gratitude.

This fall, Bowen graduated from daycare and transitioned into junior kindergarten. The change could have been daunting, but the leadership team at his School in Collingwood have made it seamless. The entire school community has embraced him — from his classmates to the older students who can’t help but light up when he enters a room. Bowen’s happiness has a way of spreading; he reminds everyone around him of what pure joy looks like.

Of course, there are still challenges. Fragile X is complex, and managing the day-to-day realities requires patience and perseverance. But those moments are outweighed by the extraordinary kindness and strength of the people in our community — teachers, therapists, friends, and neighbours — who continue to show us that we’re not alone in this journey.

As Bowen turns five, we are filled with pride for who he is and hope for what’s ahead. His story is a daily reminder of why my dad started Bowen’s FX — to give families like ours access to solutions, to science, and to hope.

Thank you to everyone who continues to walk beside us. Your support fuels progress not only for Bowen but for every child and family touched by Fragile X Syndrome.

Bowen's
Story
Continued

Bowen is absolutely thriving and quickly making advancements in his development, both physical and cognitive. We owe this to the outlook/methodology we've adopted in caring for him - which is to treat him like every other kid. Bowen loves to swim, goes crazy for boat rides with us and Jeff (Papa), and will be starting his 3rd ski season this coming January! While his path will be different, there's no telling what this little guy is going to accomplish in life.

We owe great thanks to our support systems. Both sides of our extended families and special education practitioners have been our backboards and have helped us adapt, enabling us to get Bowen to where he is today, and more importantly, help to where he's going. Unfortunately, not everyone living with this reality has the support they need. We hope our research closes the gap by improving the outcomes for all families living with Fragile X.