Sibling Story: Alec and Conor
Written by: Alec Romick
Growing up with my younger brother, Conor, has been a profound experience that has shaped not only my perspective on life but also my career aspirations. I vividly remember the first time I felt the terrifying helplessness of watching him during an epileptic seizure. Conor, just an infant at the time, lay unresponsive, his body tense and his eyes rolled back as my family huddled in fear. The sight of paramedics rushing in and carrying him away is forever etched in my memory. Although I was only ten years old, I understood that our lives had changed forever.
That first seizure was the beginning of a long journey. Despite countless visits to doctors, undergoing various tests, and trying multiple medications, Conor’s seizures persisted. My family’s anxiety grew with each treatment failure, but amid this worry, I also witnessed something extraordinary: the unwavering dedication of the healthcare professionals working tirelessly to help him. After many months, Conor was diagnosed with lissencephaly, a rare neurological condition.
Under the care of his dedicated pediatric neurologist, Conor's condition stabilized with the help of a vagus nerve stimulator and clobazam. Through genetic testing, we were fortunate to identify a de novo mutation in the DYNC1H1 gene—coincidentally containing Conor's initials, "CH." As his health improved and a clearer path forward unfolded, I experienced a profound shift within myself. I knew I wanted to help others as Conor’s doctors had helped him and work to raise awareness for children with epilepsy, especially those with mutations in the DYNC1H1 gene.
Conor, however, has always been more than his diagnosis. From the outside, many see a 13-year-old boy who wears diapers and cannot walk or talk. But those who know him understand that he is the toughest soldier I have ever met. Despite enduring a life of seizures, Conor remains one of the happiest people I know, always defying expectations. He army crawls around the house with ease, has learned to stand on his own, and can walk when someone holds his hands. His resilience has been nothing short of inspirational.
Conor has also shown that communication transcends words. When he wants the fan on, he’ll point at it and say “turn on,” and he consistently follows instructions, like crawling to the couch for dinner at 6 p.m. every evening. He’s even learned sign language and can identify his head, nose, and mouth when asked. His joyful mimicry of sneezes or the sound of a “choo choo” train is just a glimpse of how engaged he is with the world around him.
Living with Conor has taught me invaluable lessons. I've learned not to judge others by their appearance and to focus on what they can do rather than what they can’t. His perseverance and positivity, even in the face of enormous challenges, have inspired me to approach life with the same mindset. Conor may never experience many of the social or leisurely activities we often take for granted, but his impact on the people around him is undeniable. He touches souls with his pure spirit, and in doing so, he’s left an indelible mark on my heart.
Conor’s strength and determination have motivated me to pursue a career as a physician, specifically in pediatric neurology, where I can dedicate myself to helping children like him. Watching him defy the odds has instilled in me the desire to support other families and children facing similar struggles. Conor’s life is a testament to resilience and hope, and as I embark on my journey into medicine, I carry his lessons with me. He is my hero, and I am committed to honoring his strength by working to improve the lives of children with neurological conditions.