When I held Max for the first time, I imagined all the possibilities for his future—the boy he’d grow up to be and the life he’d live. But early on, his pediatrician noticed something unusual about his Moro reflex and suggested we see a neurologist. After an EEG, we received devastating news: Max was suffering from infantile spasms, a rare and potentially fatal condition. Doctors ran extensive tests, prescribed steroids, and sent us home with little guidance or support. We were thrown into an unfamiliar and overwhelming world, struggling to navigate this journey on our own. At first, I resisted learning about Max’s condition, clinging to the hope that it would go away, but everything changed when I saw my husband devastated after hearing Max’s grim prognosis. In that moment, I knew I had to fight for my son.

I began researching Max’s condition and discovered it was linked to a genetic mutation called SCN8A. Through this, I found support groups and connected with other families who truly understood what we were going through. That sense of community gave us hope and made us realize how little support exists for families like ours. This inspired us to create the Mad Max Foundation, an organization dedicated to helping families, caregivers, and special needs patients access the resources and support they desperately need. We also realized the importance of supporting siblings like Max’s younger brother, Zach, who loves him deeply but faces unique challenges of his own. Now, I’m calling for help—children like Max need an army of support to improve their quality of life and ensure their families never feel abandoned. Together, we can create a world where these children and their families are seen, supported, and given the chance to thrive.

- Dianely (Max’s Mom)