Happy Toddler: Reef’s Story

Meet Reef, an adorable 3-year-old boy with three brothers. Reef’s life took an unexpected turn when he started experiencing over 200 seizures a day at a very young age. Through a series of events and the unwavering support of his parents and organizations like Epilepsy Alliance Florida, Reef’s journey toward managing his epilepsy began. 

Reef’s journey began when his attentive physical therapist noticed eye flutters, a potential indicator of seizures. Concerned, the therapist alerted Reef’s parents about the possibility of focal seizures. At just 17 months old, Reef underwent an EEG, which revealed irregular brain activity, leading to his epilepsy diagnosis.

In their quest to understand Reef’s condition better, his parents decided to consult a geneticist. After months of battling with insurance, they finally obtained coverage for a specialized test called the exsome panel, which cost a substantial $10,000. The results revealed that Reef has a rare gene mutation called SYNGAP 1. This mutation can predispose individuals to epilepsy, autism, and other related conditions.

Reef’s mom, Lauren, found solace and comfort in online epilepsy support groups on social media. It was through these groups that she stumbled upon the concept of neuroplasticity—the idea that the brain is constantly changing and developing. Fueled by this knowledge, Lauren discovered a center in Orlando that offered intensive treatment for children like Reef. With the help of a scholarship, Reef underwent a remarkable five-day, eight-hour daily treatment.

Following the treatment in Orlando, Lauren received a referral and a list of protocols to guide Reef’s ongoing care. In the referral, she found the name of Dr. Clark, a specialist in North Carolina renowned for handling complex epilepsy cases. Despite the challenges and the extensive 20-page application process, Lauren and Reef persevered. A series of tests were conducted, enabling Dr. Clark to devise an appropriate protocol to address Reef’s unique needs.

Today, Reef is a happy toddler, thanks to the relentless efforts of his parents and the support of organizations like Epilepsy Alliance Florida. His daily seizures have decreased dramatically from 250 to only 3 focal seizures. Lauren expresses deep gratitude to Epilepsy Alliance Florida for providing financial assistance and connecting her with affordable resources.

Reef’s journey stands as a testament to the power of resilience, unwavering support, and access to vital resources. Through the love and determination of his parents, the discovery of a rare gene mutation, and the assistance of Epilepsy Alliance Florida, Reef has made remarkable progress in managing his epilepsy. His story inspires us to continue advocating for increased awareness, support, and affordable resources for individuals and families affected by epilepsy.