Letícia’s Light

Letícia was born in April 2013 in Camaquã, a small city in Rio Grande do Sul, Brazil. From a very young age, her family sensed that something was not quite right.

She began experiencing seizures early in life and faced challenges with motor skills, speech, and learning. Her parents searched tirelessly for answers, consulting doctor after doctor and completing countless medical tests. Over the years, they saw 14 different neuropediatricians, each hoping to help uncover what was happening.

Finally, in December 2021- after nearly nine years of searching – Letícia received the diagnosis that explained everything: GLUT1 Deficiency. After her diagnosis, the ketogenic diet helped bring her seizures under control. But life with GLUT1 still brings daily challenges, including differences in development, communication, movement, and behavior.

Yet Letícia meets life with remarkable spirit. Now 12 years old, she is described by her mother as a cheerful, loving, and bright child with a charming smile and a deeply kind heart. She loves being with her schoolmates and is dedicated to learning. Always willing to help others, she cares deeply about the people around her.

Despite cognitive limitations, Letícia understands much more than many people realize. She faces each day with resilience and determination. She enjoys spending time with her family, listening to music, dancing, and learning at her own pace.

What motivates her most is inclusion. When Letícia feels that she belongs – whether at school, at home, or in activities with others – she thrives. Feeling included encourages her to keep pushing forward and overcoming challenges day by day.

Her journey has not always been easy. In 2022, she faced difficult moments at school, including an episode of exclusion related to her ketogenic diet. For her family, this was a painful reminder of how important it is for schools and communities to understand the needs of children living with rare diseases. Information and empathy can make all the difference.

Today, Letícia’s life is filled with ongoing medical care, therapies, daily dietary management, and the unwavering support of her family. Through it all, love has been the constant.

Her mother shares a powerful reflection about life with GLUT1:

“Living with GLUT1 means learning that strength is built in invisible battles and that love becomes our greatest daily remedy.”

Living with a rare condition requires constant vigilance and adaptation. Families must navigate complex medical care while advocating for understanding in schools, healthcare systems, and society.

Letícia’s family hopes for a future with greater awareness, earlier diagnosis, and stronger support systems for children living with rare diseases. They also hope for continued research and better access to diagnostic tools so that other families will not have to wait as long for answers.

For Letícia’s mother, the journey has also been one of profound love and transformation.

“Letícia is truly a light in this world,” she says. “I feel deeply honored to have been chosen to walk this journey alongside her. The challenges are daily and constant, but the love, peace, and wisdom she teaches me every day are immeasurable.”

“She has transformed our family in ways we could never have imagined. Letícia’s eyes silently remind us that life is a blessing.”

Her message to other parents is simple but powerful: Trust your instincts.

Letícia’s mother began investigating her symptoms when she was only ten months old. Even with that early concern, it still took more than eight years to reach the correct diagnosis.

“If I could say something to other parents,” she says, “it would be this: trust your instincts and seek answers to your questions. Ask if something is expected, if it’s part of development, or if something may be different.”

“Seeking answers is not an exaggeration – it is an act of love and protection. Our children depend on the actions we take for them.”

By sharing Letícia’s story, her family hopes to raise awareness so that other children with unexplained seizures, developmental delays, or learning challenges can be evaluated for conditions like GLUT1 Deficiency sooner.

Because time matters, and earlier diagnosis can change a child’s future.