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

Our sweet boy, Bowen Parr came into our lives in April 2020, when we found out we were pregnant. With Bowen’s arrival in January 2021, we knew our lives were about to change forever, but we didn't know to what extent.

All parents are biased on the beauty of their children, but Bowen is truly angelic. As a newborn, his face was highly symmetrical, with a cute little button nose and piercing blue eyes that lit up with his giggly smile, which seemed to be a permanent state, as he was rarely fussy as a baby. Despite his adorable nature, at around 6 months we noticed that he was behind on major developmental milestones. He was behind in rolling over, sitting up, crawling, free standing and walking. As he approached the 1 year mark – more unusual symptoms started to appear; flapping of the hands and abrupt noises to name a few. At this point, we knew we had to have him seen by a professional. When he was a little over 18 months, we received his diagnosis of Fragile X, with repeats above 225.

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

Our reaction was no different than what you'd probably expect. Shock and disbelief followed by denial and grief - it was hard for us for several months and still is to this day. Reality set in - our beautiful baby boy has a lifelong mental disability which changed the fabric of our family from our expectations. Little did we know at the time, but this change would eventually become the most wonderful gift any parent could ever receive from their baby.

Although he is now approaching 4 years old and remains non-verbal, Bowen has taught everyone in his life invaluable lessons and we are all better for it. His energy and overall happiness is electric. For me specifically, he's taught me to be; patient, forgiving, to look through life's many lenses with an open mind, to not sweat the small stuff in life, and most meaningfully – have a deep level of empathy towards others.

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.

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.