Family Story: Lucia in the Spotlight
At just 2½ years old, Lucia Ponce-Coronel has already touched more hearts than many people do in a lifetime. Diagnosed with GLUT1 Deficiency at only three months old, Lucia and her family have been navigating a rare disease journey with resilience, love, and hope.
Lucia lives in Los Angeles, California, with her parents, Gloria and Rebecca, who describe her as a little girl full of light and personality. Known lovingly as “Lulu,” Lucia delights in pretend play, singing, laughing, and spending time with her family. She especially enjoys physical therapy and her keto foods, and Gloria and Rebecca like to joke that she just might be a musician someday – music and laughter seem to follow her wherever she goes.
Like many families affected by GLUT1 Deficiency, Lucia’s early months were marked by uncertainty. Seizures were frequent and intense, sometimes lasting as long as five minutes. Everything changed when Lucia began the medical ketogenic diet.
Her parents are candid about the reality of this treatment. “A seemingly impossible diet becomes easier with time and practice,” they share. “Our motivator is Lucia’s success. The ketogenic diet has been life-changing. It’s not easy, but it is doable.” Today, Lucia’s seizures have been reduced dramatically – from minutes to just three to five seconds – a transformation her family describes as exactly that: life-changing.
While the diet has made an extraordinary difference, Lucia’s parents continue to look toward the future with hope. They dream of continued improvements in her mobility and strength, and of a day when the ketogenic diet won’t be the only treatment option available for children like Lucia.
In recent months, Lucia’s story reached an even wider audience when she was featured in a major Children’s Hospital Los Angeles (CHLA) awareness campaign. Lucia’s neurologist nominated her because she is such a powerful success story of the medical ketogenic diet in treating epilepsy – and because CHLA wanted to show other parents that this approach is a credible and effective option.
What the family expected to be a large, crowded campaign gathering turned out to be something much more intimate. “We imagined they were going to bring 100 patients for this day-of-play campaign. Instead, it was 10 children, and Lucia was one of them,” her parents recall.
Lucia participated in a professional photo shoot and appeared in a commercial narrated by Jamie Lee Curtis, part of a broader CHLA campaign tied to Giving Tuesday. The outreach extended across billboards, banners near the hospital, print, radio, and street signs, including a moment that still feels surreal to her parents: Lucia’s photo displayed on a billboard on Sunset Boulevard.
Lucia and her family were also featured on KOST 103.5 with Ellen K, where they shared Lucia’s story in hopes of increasing awareness about GLUT1 Deficiency and encouraging donations to CHLA.
The experience has been deeply meaningful for Gloria and Rebecca. “We felt humbled and honored to bring awareness to GLUT1. We were so happy to be given a platform to talk about this rare genetic disorder,” they say. “Gloria and I don’t have words to express her being included in these campaigns. We have an immense sense of pride in our baby.”
As for Lucia herself? She’s still getting used to all the attention. “Lucia is very shy about knowing she’s on a billboard,” her moms share with a smile. “We recently went to visit and can share a little video of her reaction.”
When asked what they want others to know about Lucia, her parents don’t hesitate: “Lucia defies all odds. She makes every day better, and we are so lucky to be her moms.”
Lucia’s story is a reminder of what’s possible with the right care, community, and advocacy. We are so grateful to Lucia and her family for sharing their journey and for helping shine a brighter light on GLUT1 Deficiency for families everywhere. 💙
