Max was born in 2019 after nearly 30 hours in the hospital. From the start, we noticed a large, bruise-like red mark on one side of his face. Though overjoyed and exhausted, we thought it would fade with time. We soon discovered that it was more than a bruise and our world would turn upside-down. That was when the doctor handed me a slip of paper with these three little words: Sturge-Weber syndrome. The medical team quickly recognized that Max’s birthmark wasn’t just a bruise—it was a sign of a rare neurological condition.
“Don’t google it,” the doctor advised, but I couldn’t resist. We learned that the syndrome involved far more than a birthmark which could lead to seizures, glaucoma, and developmental challenges of varying severity. Max’s first year was a blur of medical appointments, tests, and therapy. At 11 months, he had his first seizure. When we rushed to the ER, the doctors doubted my claim of a 20-minute seizure. “Parents always feel it’s longer than it actually is,” they said until I showed them the video on my phone. His seizures were severe and often prolonged, requiring days in the PICU to control. Despite medication adjustments, and often with prolonged stays in the PICU, Max continued to have breakthrough seizures. Nothing seemed to stop them from happening.
When doctors suggested disconnecting half of his brain we were terrified yet hopeful this was the answer to stop the seizures. Before we could make that decision, another round of seizures and the possibility of a medically induced coma left us with no choice. In April 2021, just before his second birthday, Max underwent a right hemispherectomy. From that day forward, he would be living without the right side of his brain.
Fast-forward three years and Max is now 5 years old. The surgery has been nothing short of a miracle. He’s been seizure-free and off medications since. Developmentally, he’s made incredible strides. He began walking at age three and began forming words at age four, including saying “Mama” for the first time. Over the past year, his language has blossomed, and he can now carry on conversations, sharing his love for Sesame Place and its furry friends.
Despite everything Max has been through, he is a beacon of bravery, resilience, and joy. He lights up every room with his infectious smile and indomitable spirit. We couldn’t be prouder of our little warrior and we are eagerly anticipating the incredible things his future holds.
