My son Max was born with a large, bruise-like red mark covering one side of his face. With the help of an experienced medical team, we quickly learned that the mark wasn’t a bruise but a sign of a rare neurological condition called Sturge-Weber syndrome. Max began having seizures at 11 months old. They were severe and often prolonged, sometimes leaving him in the intensive care unit for days while doctors worked to stabilize him. He continued to experience breakthrough seizures despite having maxed out two seizure medications.

A few months before his second birthday, Max underwent a right hemispherectomy, a surgery that completely disconnected the right side of his brain. The change afterward was remarkable. He learned to walk around age three and to talk around age four. Max is now six years old. Although he continues to face challenges, he has made incredible progress. We are so proud of him and cannot wait to see all the amazing things he will achieve in the future.

When seizures are uncontrolled and medications fail, parents are forced to make complex, high-stakes decisions while managing fear, exhaustion, and uncertainty. Having walked down that path, I’d love to share my experience to provide support during an overwhelming time. No family should have to navigate epilepsy surgery alone.

Languages spoken: Chinese (Mandarin), English