When Carter Williams was born, everything was fine. But when Carter was three months old, his parents Lauren and Casey Williams realized something wasn’t right because he didn’t make eye contact.
The road to a diagnosis was not straightforward. Lauren remembers it took visiting four pediatricians before Traci T. Brumund, MD, at the Baton Rouge Clinic took them seriously and helped them find answers. The whole family had genetic testing done, and Carter was diagnosed with GRIN1 disorder. Now three, Carter is one of about 70 people in the world to receive such a diagnosis.
The rare genetic condition is characterized by developmental delays and intellectual disabilities among other symptoms, including seizures. In Carter’s case, GRIN1 disorder occurred spontaneously and wasn’t passed down from his parents.
Although he is the developmental age of a six-month-old, Carter uses a multitude of equipment to get around and do some things other children do. “He can sit up and has just started taking steps in a gait trainer,” Lauren says.
“Right now, we can only treat the symptoms because there isn’t a cure. Every therapy possible, we’re doing it, and we’re trying trials,” Lauren says. About once per year, Carter will be admitted to the hospital, usually because of his seizures. Even going a year between seeing him, doctors remember Carter. “He’s not a child you forget,” Lauren explains.
“We’re grateful for the support that we have,” Lauren says. “My mother watched him for the first three years.” Then, the family got a waiver for Medicaid, giving them access to a medical daycare. “[Traditional] daycares just won’t take medically fragile children like that,” she says.
Carter attends a new PreK program at Bellingrath Hills Elementary School, two days per week. The other three days find Carter with a caregiver or at PediaTrust, a medical daycare provider.
“I can’t even explain how amazing this team at Bellingrath is,” Lauren explains. “They fell in love with my son and they treat him like any other child. As a mother, to have something like that in his life is something I can’t find everywhere.”
Although GRIN1 makes Carter’s progress slow, he is working toward a lot of goals. He is nonverbal and his vision is impaired, and he can’t control his arms or hands to reach for things.
“Right now, we’re working mainly on communication. He has created his own ways to show us what he needs, which is amazing. We’re trying to find a device that will work specifically for him so he can communicate with us,” Lauren says.
Together with other GRIN1 families, the Williamses have launched a foundation to find a cure. Lauren volunteers with donor management and running social media for the CureGRIN Foundation. “It’s created a passion in me that I didn’t have before,” Lauren says.
While Carter leads an exceptional life dealing with delays from GRIN1, he also likes to have fun. He enjoys going to the zoo, and “he really enjoys rocking out,” Lauren says. Carter’s favorite band is Panic! at the Disco. Lauren also maintains a Facebook page, My Carter Man Can, chronicling their lives.
