How Carter is Changing the World: Honoring my Son’s Memory by Building Awareness of GRI Disorders
April 14, 2016, was the best day of our lives. For my husband, Casey, and I, the date marked the end of 36 weeks of waiting to meet our child. We decided not to find out our baby’s gender before the birth—I’ll never forget hearing my husband yell out “It’s a boy!” when our when our Carter Keith came into the world. I finally knew what perfection was, as he lay on my chest, staring up at me on the first day of his life. We could never have predicted that our worlds would turn upside down multiple times over the years that followed—first when Carter was diagnosed with GRIN1 neurodevelopmental disorder, and again when he suddenly passed away on September 28, 2023.
We first noticed something might be wrong with Carter’s health when he was about three months old. He wasn’t able to focus, track objects or make eye contact. In the months that followed, he developed additional health complications that confused and terrified us. He wouldn’t sleep, missed milestones, was diagnosed with hypotonia (low muscle tone) and was unable to gain weight due to constant vomiting. We spent months taking Carter to various pediatricians, many of whom told me that my son’s problems were all in our heads. After consultations with ophthalmologists, neurologists, gastroenterologists and neuro-ophthalmologists, Carter finally underwent extensive genetic testing known as Whole Exome Sequencing. He was diagnosed with GRIN1 neurodevelopmental disorder on October 17, 2017.
Like many parents of children diagnosed with rare diseases, we knew nothing about Carter’s condition when he was first diagnosed. Eventually, we learned that GRIN1 is part of a larger group of syndromes called GRI disorders, which can cause severe seizures, developmental and speech delays, and muscle weakness. Like Carter, many children with the condition struggle with walking, talking, eating and performing basic daily activities. Currently, there are no treatments available, and care is limited to a myriad of therapies, nutritional support and medications to help manage symptoms.
As soon as Carter was diagnosed, I realized that my purpose in life was to do everything I could to improve his quality of life and ensure his happiness.
I began reading everything I could about GRIN1 and found a Facebook group made up of other parents impacted by the condition. When we weren’t bringing Carter to physical, vision, swim and occupational therapy appointments, I was connecting with other parents whose children were affected by the same symptoms, reading about the latest research in the field and even testifying at the state legislature on behalf of Carter.
One of the most important milestones of our lives was co-founding CureGRIN, a nonprofit dedicated to improving the lives of people around the world affected by GRI disorders and their families through research, education and resource support. Since our inception, we have raised more than $2.3 million to advance research, partner with pharmaceutical companies, champion advocacy and educate and connect the global GRI community.
One of the things we learned about GRI disorders in the months following Carter’s diagnosis is that the condition was only recently discovered. As a result, it was difficult for his doctors to predict what his future might look like. For several years, Carter’s health was stable. He attended his usual therapies and was able to go to school with other kids his age, and his doctor’s appointments were less frequent. I made it my mission to stay one step ahead of GRIN1, but eventually the disease began rearing its ugly head in other mysterious ways. He started getting sick in May 2023, but his tests didn’t reveal any significant new problems. We were shocked when he passed away only four months later.
Like many parents of children affected by rare diseases, Casey and I feel it is important for Carter to be remembered for the life he lived beyond the challenges he faced.
Carter was a bright light. Imagine you’re deserted in nothing but blackness, only a small tear of light in the distance leading you into a new world full of color and magic. That was Carter. He was resilient, stubborn, passive aggressive, sociable, hilarious, charismatic and continues to be the love of my life. He was the hardest worker I’ve ever known. To say that we will miss him every day for the rest of our lives would be the ultimate understatement.
Carter helped us to learn many meaningful things during his short life. He demonstrated the importance of communication, determination and finding beauty in the most unexpected places. Carter showed us how to be grateful for the present while also hoping for a better future. While Carter was unable to verbally communicate during his life, he has humanized GRI disorders and his legacy has spread across the globe.
I hope Carter is proud of me for continuing my work with CureGRIN after his passing. In the seven years since the organization was established, we have grown from 30 members (GRIN1) to thousands covering all GRI genes. When we began our work, there were very few publications about these disorders, and little to no research underway. Today, promising clinical trials are in progress, and I can envision a future where children with GRI disorders will not face the same devastating effects that Carter did. Until then, Carter’s life and memory will motivate us to continue our fight against GRI disorders.
About The Author
Lauren is a co-founder and Director of Family & Donor Experience for the CureGRIN Foundation, a nonprofit dedicated to improving the lives of those diagnosed with GRI disorders. She is a graduate of Louisiana Partners in Policymaking and was appointed to the Louisiana Rare Disease Advisory Council in 2022, advocating on behalf of Louisianans living with rare diseases. Lauren’s love for her son, Carter, who was born with a mutation of the GRIN1 gene, has ignited a new ambition and purpose in life…finding a cure for GRI Disorders.
