Joey is a 21-year-old young man from Ohio who loves outdoor adventures, music, and, most of all, having a good time. He is the youngest of five children, and he is a happy guy who loves to laugh. His smile and joyful spirit are a reminder that there is so much more to a person than the challenges they face.

But Joey’s journey has not been an easy one.

At just 8 years old, Joey experienced his first seizure. That was the beginning of a long and challenging journey with intractable epilepsy, a form of epilepsy in which seizures are difficult to control despite treatment.

Over the years, Joey has endured countless challenges. He has undergone brain surgery and has both a vagus nerve stimulator (VNS) and a deep brain stimulator (DBS) to help manage his seizures. Unfortunately, his seizures have also caused serious physical injuries, requiring three shoulder reconstruction surgeries.

As a family, we have experienced the fear, uncertainty, and heartbreak that come with watching someone you love battle a condition that cannot always be controlled. We have learned that epilepsy is so much more than what people see during a seizure. It affects everyday life, brings constant concerns about safety, and can lead to injuries and medical challenges that others may never fully understand.

Then, in June 2026, Joey received another diagnosis: ReNU syndrome, a rare genetic neurodevelopmental disorder associated with changes in the RNU4-2 gene. This diagnosis added another chapter to Joey’s already complicated medical journey. ReNU syndrome can affect people in different ways, and research is still growing as scientists learn more about this condition.

Receiving a rare diagnosis brings new questions, new uncertainties, and a need for greater awareness, understanding, and research. For families like ours, knowledge is important because it helps us better understand the challenges our loved ones face and advocate for the care and support they need.

But through it all, Joey is still Joey.

He is our adventure-loving, music-loving, laughter-filled young man. He is not defined by the number of seizures he has had, the surgeries he has endured, the devices he carries, or the diagnoses written in his medical records. He is a person with a personality, interests, a family who loves him, and a life that deserves to be celebrated.

We share Joey’s story to raise awareness about intractable epilepsy and ReNU syndrome. We want people to understand the realities of living with difficult-to-control seizures and the additional challenges that can come with a rare genetic diagnosis.