Madison is an extraordinary 11-year-old girl with a radiant smile and an unstoppable spirit. She has a heart full of courage, and her laughter brings warmth to everyone around her. But behind her bright eyes is a story of resilience, strength, and a battle that she faces every single day.

 

Four years ago, Madison was diagnosed with GRIN2A-related neurodevelopmental disorder, a rare genetic condition that affects brain development and function. For our family, this diagnosis was both an answer and a new beginning—a name for the struggles we had witnessed but didn’t understand, and the start of a journey filled with challenges we never expected to face.

 

One of the most difficult parts of Madison’s condition is her seizures, especially the absence seizures that she experiences daily. Unlike the dramatic convulsions many people associate with epilepsy, absence seizures are subtle, almost invisible to an untrained eye. But for Madison, they are powerful interruptions—brief, sudden moments when her brain simply disconnects.

 

During an absence seizure, Madison might stop mid-sentence, her gaze fixed on something far beyond us. Her face becomes blank, her eyes glassy, and for those few seconds, she’s unreachable. It’s like someone has pressed a pause button on her life. Sometimes it lasts only 5 to 10 seconds often has lasted longer , but those seconds feel like an eternity. When the seizure ends, she blinks, looks around, and often seems confused, unaware that anything happened.

 

These seizures don’t come with warnings. They strike at any time—while she’s eating, playing with her siblings, or even crossing the street. This unpredictability is terrifying. It means constant vigilance for us as her parents, Heather and Anthony, always ready to catch her if she loses her balance or to gently guide her back when her mind drifts away.

 

Madison’s siblings—Karli, Shania, Caleb, and Jaxson—have learned to recognize the signs too. They’ve grown up knowing how to support her, watching for the slight flutter of her eyelids or the way her hands might still mid-motion. They are more than just siblings; they are her safety net, her team of quiet heroes who step in without hesitation.

 

Managing Madison’s seizures has been an ongoing struggle. We’ve spent countless hours in hospitals, sitting in sterile rooms filled with blinking machines, hoping for answers. We’ve tried different medications, adjusting doses, enduring side effects that sometimes feel worse than the seizures themselves—drowsiness, mood swings, and days when Madison is just not herself. Despite our efforts, we still face these seizures daily, each one a reminder of how much we’ve yet to conquer.

 

But Madison is so much more than her seizures. She’s curious, kind, and incredibly brave. She loves music, bright colors, and the simple joys of being surrounded by her family. Even on the hardest days, her spirit shines through—whether it’s in her infectious giggle or the way she squeezes your hand just a little tighter, as if to say, “I’m still here. I’m still fighting.”

 

Our journey with Madison has taught us that awareness is everything. Absence seizures are often misunderstood or overlooked because they don’t look dramatic. People might think a child is daydreaming, zoning out, or not paying attention, when in reality, they’re having a seizure. That’s why we share Madison’s story—not just to honor her strength, but to help others recognize the signs, to advocate for better treatments, and to connect with families walking a similar path.

 

Madison’s life is a testament to resilience. Every day she faces a battle most people never see. But she wakes up, smiles, and keeps going. She’s a fighter, a warrior in a small body, with a heart that holds more strength than we could have ever imagined.

 

And through it all, she teaches us what it truly means to live—with love, hope, and courage, even in the face of the unknown.