Remarkable Women: Baton Rouge mom helps other parents after losing son to rare disorder

Yahoo

12-03-2025

BATON ROUGE, La. (Louisiana First) — A Baton Rouge mom started a nonprofit organization with several other families after losing her only child to a rare disorder.
'Carter absolutely changed my life. He made me a better person, and I think he changed everybody's life that he came into contact with,' CureGRIN Foundation Director of Family & Donor Experience Lauren Williams said.
Carter passed away in September 2023 from a rare neurodevelopmental disorder at 7 years old. Williams said her son will always be remembered for his laughter, glasses, and love for outer space.
'He was who he was. GRIN did make him who he was and I never would change that. But if I could have alleviated any of the pain and any of his struggles, I would have done it,' said Williams.
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As a new mom, Williams said she immediately noticed something different in her premature newborn before leaving the hospital. Initially, she believed it was just anxiety. When it still didn't sit right with her, she spent hours each day doing research, working as late as 3 a.m. looking for answers.
'It was kind of like he would stare in space like he was in his own little world and no one else existed and so that started me on meeting with different pediatricians to figure out is it just a delay that he'll catch up with, or is it something more than that,' Williams said.
After going through nine pediatricians, it turns out Carter was diagnosed with GRIN1, a form of a Glutamate Receptor Ionotropic (GRI) Disorder. Genetic sequencing led to the discovery that he had grown one when he was 1 and a half years old.
Williams said connecting with other parents through social media who were experiencing similarities with their child brought relief, comfort, and validation.
'It's one thing to have a community of people who your child share all these symptoms and whatever, but it's another thing to have them have the exact same diagnosis and know, 'Okay, I found my people,' Williams said.
Williams and five other groups of parents founded CureGRIN, an organization committed to improving the lives of people living with GRI Disorders.
'I decided it'd be a good idea to have a central hub or a way for people with this diagnosis to have a place to go for resources, knowing somebody is out there advocating for a cure and a treatment, knowing families won't feel so alone,' Williams said.
Williams said it's unheard of to go from no research on GRIN1 in 2017 to three clinical trials in 2025.
'It took years as a mom waiting to come home to your child to run up to you. And it took years for him to be able to do that. And it was a moment that has stuck in my brain. And to watch these families be able to experience, 'Oh, my God, I thought my child would not be able to do anything to I can't believe this is happening,'' said Williams.
Williams said Carter's passing pushed her towards her purpose to help other parents find answers through CureGRIN.
'It gets me out of bed in the morning, and that's what keeps me going. But seeing Carter, I have him. He's just a part of this house,' said Williams.
Today, the CureGRIN Foundation helps over 300 families and has raised over $2 million to support parents and advance research efforts. Globally, there's over 1,000 GRI disorder diagnoses.
'Access to genetic testing is going to show everyone how unrare rare is,' Williams said.
Remarkable Women: Baton Rouge mom helps other parents after losing son to rare disorder
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