Epilepsy was not unfamiliar to the family of Ronan who was diagnosed at just four-years-old with childhood absence epilepsy after his first EEG showed twelve full seconds of seizure activity. As the second member of the family to receive an epilepsy diagnosis, Ronan faced a unique set of challenges, and his family once again found themselves navigating the complexities of the condition. With love, determination, and a deeper understanding of epilepsy, they worked together to better understand the uncertainties of his diagnosis while ensuring Ronan could continue to grow, learn, and enjoy childhood.
An epilepsy diagnosis can look very different from one person to the next, and it often involves much more than seizures alone. Despite the common misconception, seizures do not need to be triggered by flashing lights, and each individual’s seizures can be caused by a different set of triggers. Even with two family members living with epilepsy, over time Ronan’s family learned this firsthand. In addition to seizure activity, epilepsy can bring a wide range of challenges, including migraines, processing delays, mood changes, sleep disturbances, safety concerns, dietary adjustments, and mental health struggles that can stem from feeling different from peers. Many of these impacts are invisible to others, making the journey even more complex for individuals and families managing an epilepsy diagnosis.
Between September 2025 and March 2026, Ronan experienced multiple seizures each day, creating new safety concerns that his family had not previously faced. Throughout this difficult period, Ronan demonstrated remarkable self-awareness and courage. With the support of his parents, he learned to advocate for himself by openly communicating with his doctors about how he was feeling and how the seizures were affecting his daily life. His family shared their gratitude for the attentiveness of his primary care provider in helping their family advocate for Ronan from the medical standpoint. Together, they successfully navigated a medication change and developed strategies to help Ronan communicate about his seizure activity with both his medical team and his family. His willingness to speak up and take an active role in his care has become an important part of his epilepsy journey.
Now 7 years old, Ronan and his family continue working toward their shared goal of one day achieving complete seizure freedom. While he currently experiences between one and five seizures each week, Ronan and his family have established a carefully structured routine to help manage his epilepsy and ensure his safety. He follows a specialized diet that limits carbohydrates, takes two daily medications, prepares for times of day that can be particularly triggering, and maintains a consistent sleep schedule. Through dedication, teamwork, and perseverance, Ronan and his family continue to adapt and find ways to support his health and well-being.
Ronan is homeschooled and dreams of someday pursuing a career in geology. His love of learning inspires him to explore the world around him, and he hopes to learn rock climbing in the future to support his passion for studying rocks and the outdoors. Despite the challenges epilepsy can bring, Ronan continues to embrace new experiences and celebrate important milestones. This summer, he has become more confident riding his bicycle and has developed strong swimming skills; even learning to swim without a flotation device. Each accomplishment is a testament to his determination, resilience, and adventurous spirit.
Ronan is surrounded by a strong and compassionate support network that plays an important role in his epilepsy journey. Throughout his journey, he has continuously had ongoing support and love from his family, including his grandparents. His mother actively participates in caregiver support groups and epilepsy coaching sessions, helping their family build knowledge, strength, and community connections. Together, Ronan and his family have become dedicated advocates for epilepsy awareness, using their experiences to educate others and reduce stigma surrounding the condition.
Their advocacy efforts have already made a meaningful impact. In November 2025, through the family’s leadership and determination, Gouverneur, New York officially observed Epilepsy Awareness Month for the first time. They helped educate their community about the prevalence and realities of epilepsy, bringing greater understanding to a condition that affects millions of people. The family has also worked to raise awareness within their local community, helping teachers and classmates at St. James School better understand epilepsy and how it affects daily life.
Ronan and his family continue to turn their experiences into action. On September 13th, they participated in the Adirondack Walk for Epilepsy in Inlet, New York, where they walked alongside other families, advocates, and supporters while raising funds to advance epilepsy education, support services, research, and awareness. Through their advocacy and involvement, their family is helping create a more informed and supportive world for people living with epilepsy.
What does Ronan want others to know about epilepsy?
“Epilepsy is about more than seizure activity.”
