A Family’s Journey with FOXG1.

Lucas is the star of our show. He’s an 8-year-old boy battling FOXG1 syndrome, a medically complex condition. Though non-verbal and non-ambulatory, Lucas more than makes up for it with his larger-than-life personality. His spirit truly shines when he’s listening to his favorite artist, Billie Eilish, or embarking on adventures in his all-terrain stroller.

Lucas’ support system is extensive. His mother Perla, her husband Alden, an older brother, two sisters, and his natural father form the core. Beyond family, an amazing team of doctors, nurses, medical specialists, and suppliers help us provide round-the-clock care. It truly takes a village!

Born in July 2016, Lucas’ journey with FOXG1 began early. Within a month, Perla noticed differences in his eating and sleeping patterns compared to his siblings. By 6-9 months, delays in balance and motor skill development became apparent. After a year of testing and confusion among medical experts, a diagnosis of FOXG1 was finally made.

At the time, FOXG1 was poorly understood. We found ourselves learning about the syndrome alongside the medical community. Lucas’ childhood has been marked by sleep difficulties and frequent seizures, symptoms associated with the syndrome’s impact on brain activity.

Balancing Lucas’ medical needs with full-time jobs and navigating the complexities of the American medical system definitely took its toll. Now that Lucas’ environment has stabilized somewhat, we want to share our experiences.
Our goal is to help smooth the path for others facing similar challenges. We hope that by sharing our story, we can help families spend less time grappling with difficulty and more time cherishing the joy that radiates from inspiring individuals like Lucas.

From our family to yours, welcome to our blog. Here, we aim to raise awareness about FOXG1 and other complex medical conditions, offer support through shared experiences, and celebrate the unique journeys of our extraordinary children.