Meet Reef: A Story of Strength and Hope

Reef is a lively 3-year-old boy, the youngest of four brothers. His journey with epilepsy began when he was just a baby. At a very young age, Reef started experiencing over 200 seizures a day. It all started when his physical therapist noticed subtle eye flutters, raising concerns that these might be focal seizures.

At just 17 months old, Reef underwent an EEG that revealed irregular brain activity, leading to his diagnosis of epilepsy. Determined to understand their son’s condition better, Reef’s parents sought out a geneticist. After months of persistence and navigating insurance challenges, they were able to secure an exome panel test, a crucial step in their search for answers. The test revealed that Reef has a rare gene mutation called SYNGAP1, a condition that can predispose him to epilepsy, autism, and other health challenges.

Lauren, Reef’s mother, found comfort and community through epilepsy support groups on social media. It was there she learned about neuroplasticity—the brain’s incredible ability to change and adapt. Inspired, Lauren found a specialized treatment center in Orlando, where Reef participated in an intensive 5-day therapy, supported by a scholarship. The treatment was a turning point in Reef’s journey.

Through this experience, Lauren was referred to Dr. Clark in North Carolina, a specialist known for handling the most complex epilepsy cases. The process was daunting, with a 20-page application and numerous tests, but it brought them closer to finding the right care for Reef.

Today, Reef is a joyful toddler who has made incredible progress—going from 250 seizures a day to just three focal seizures. Lauren is deeply grateful to Epilepsy Alliance Florida for their unwavering support, helping her family access the financial assistance and resources they needed.