At the end of January 2025, Ezra was diagnosed with Sturge-Weber Syndrome, a rare neurological disorder characterized by vascular malformations affecting the skin, brain, and/or eyes. In Ezra?s case, it involves both his skin (a port-wine stain birthmark) and his brain. His eyes are being closely monitored by ophthalmology every three months.

The brain involvement can cause neurological complications, and for Ezra, this includes focal epilepsy. Following his most recent hospitalization due to seizures in August, his case was presented at an epilepsy conference, where the team unanimously agreed that he is a good candidate for posterior quadrant disconnection surgery.

During this procedure, Ezra?s surgeons will disconnect the occipital, temporal, and parietal lobes of his right hemisphere, with the goal of achieving seizure freedom and preserving the function of his frontal lobe and the healthy left side of his brain. Another goal of the surgery is to gradually reduce his reliance on multiple anti-seizure medications.

Our hope is that this surgery will give Ezra the best chance at improved development, cognition, and overall quality of life. He is our joyful warrior, and we know he won?t let anything stand in his way.

We will be traveling to Boston at the beginning of December for surgery. We hope you?ll consider buying a little piece of his journey to support him on surgery day (December 4th) and throughout his recovery.