There was rarely a quiet moment in my childhood home as the youngest of seven kids in a bustling, loving family in Pittsburgh, Pennsylvania during the 1970s and 80s. My mom was famous for imparting her wisdom, and one lesson one that stuck with me most was this: “Life begins and ends with family.”
She’d say that people would come and go through the different seasons of life, but family is forever. That sentiment rings as true today as it did back then.
After nearly two decades of career-building on both coasts, my husband Kevin and I chose to settle in the Denver area in 2009. We wanted to build a home rooted in the same kind of family-centered values I was raised with. For me, that meant dedicating myself to raising our daughters: Kylie, now 20, and Kaitlin, who is 18 and lives with GRIN1 neurodevelopmental disorder (GRIN1 NDD) and requires a significant level of care.
As the years pass, I’ve come to cherish the power of family more deeply than I ever imagined possible, not just as a source of strength, but as the foundation that carries us through the most uncertain moments.
The Long Road to Answers
Kaitlin’s path to diagnosis was long and winding. For the first six to eight months, we carried on none the wiser, raising two happy girls and soaking in the joys of family life. But as the months passed, our concern began to grow. Kaitlin wasn’t hitting the typical developmental milestones: by her first birthday, she still couldn’t sit up on her own, make eye contact, wave, or babble.
Her pediatrician and numerous specialists spoke in vague, clinical terms including “intellectual” and “global delays,” words that hinted at something deeper but offered no clear answers. It would take nearly a decade before we’d finally learn she was living with GRIN1, a rare neurodevelopmental disorder. But even at that early stage, we knew: the course of our lives had shifted in a profound and permanent way.
From that moment on, we committed ourselves to finding answers and advocating fiercely, not only for Kaitlin, but for Kylie too. Because the journey ahead would affect our entire family.
We fully embraced our roles as Kaitlin’s protectors and advocates, stepping into a “new normal” filled with specialist visits, tests, therapies, and countless questions. We became relentless in our pursuit of anything that might help her thrive.
Through it all, we stayed rooted in optimism. We were determined to give Kaitlin every opportunity to experience the joys that neurotypical children often take for granted like the feel of sunshine outdoors, the thrill of a car ride, the power of music, the warmth of gatherings with friends and family, or the rhythm of movement and exercise. If it could bring her joy, we found a way to do it.
At age 10, Kaitlin finally received a diagnosis. A Whole Exome Sequencing test ended years of uncertainty, identifying the root cause of her symptoms: GRIN1 NDD.
We learned it was an extremely rare genetic condition caused by pathogenic variants in the GRIN1 gene, a diagnosis that explained so much of what we had seen in Kaitlin over the years. GRIN1 NDD is part of a larger group of disorders known as GRI disorders, which were only first classified about 14 years ago. The condition can cause a wide range of symptoms, including developmental and speech delays, muscle weakness and seizures, which often cannot be controlled using standard anti-seizure medications.
After so many years, it was bittersweet to finally have a name. Knowing what it was didn’t change our day-to-day reality. GRIN1 NDD remains a condition without a treatment, so care is still limited to motor, speech, and vision therapies, nutritional support and medications to help manage symptoms. But the diagnosis gave us clarity, language, and community.
Today, we continue to take a holistic approach to Kaitlin’s care, supported by an incredible team at the Center for GRI at Children’s Hospital Colorado, along with her ophthalmologist, dentist, GI specialist, pediatrician, and a dedicated group of therapists and amazing teachers.
Wrapped in the Arms of Loving Family and Communities
While our journey has been filled with challenges, setbacks, and moments of deep frustration, it has also been filled with profound beauty. Kaitlin will require lifelong support. But in raising her, our family has grown in ways we never imagined.
We’ve learned to be patient. To adapt. To persevere. We’ve learned the true meaning of resilience. Every day, we’re in awe of Kaitlin: Her courage, her gentle spirit, and the quiet strength she brings into our lives. And every day, we’re equally moved by the extraordinary bond she shares with Kylie. From the beginning, Kylie has seen herself as Kaitlin’s protector, just as Kevin and I do, and watching their love for each other is one of the greatest joys of our lives.
This journey has taught us that parents must be relentless advocates for their children. We’ve learned the value of teamwork, honesty, and holding space for both the good and the hard days. Some days, we’re just plain exhausted, and we don’t pretend otherwise. But even in those moments, we celebrate the “little” victories. The milestones that, for families like ours, are anything but small.
Most of all, we’ve learned we’re not alone. We’ve found strength in the wider GRI disorder community, and in the experts, allies, and fellow families walking similar paths. That connection has been a gift.
Kevin and I remain committed to raising awareness for GRIN1 NDD, and to reminding others that Kaitlin, and those living with rare diseases everywhere, are not only deserving of endless love, but are capable of teaching us more about life than we ever thought possible.
To learn more about GRI disorders and the CureGRIN Foundation, visit www.CureGRIN.org.
Author Bio:
Maureen Bennett lives in Centennial, Colorado, with her husband Kevin and daughters Kylie and Kaitlin. After working in the entertainment industry in New York and Los Angeles for nearly 20 years, Maureen settled with her family in the Denver area in 2009 to dedicate her attention to raising her two daughters, one of whom lives with GRIN-1 neurodevelopmental disorder and requires a great deal of care.
