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As I sit here on my porch listening to the crickets chirp and the birds sing, I let myself breathe in the cool air and notice how the evenings are beginning to change. Life’s what you make it, and sometimes the simplest moments remind us of the beauty of…

Some mornings I wake up and wonder what it would feel like to breathe without urgency. To pour a cup of coffee without checking a seizure monitor. To not have my heart in my throat while waiting for a doctor to call me back. I wonder what it would…

I never imagined I’d become fluent in a language built on seizures, regression, and uncertainty. But when late-infantile Batten disease (also known as CLN2 disease) entered my life, I felt like the ground had disappeared from under me. Nothing prepares a parent for this kind of diagnosis. There’s no…

When my son, JuJu, was diagnosed with CLN2 Batten disease, our entire world shattered in a moment. But I didn’t expect that we’d be forced to fight not just a devastating illness, but also an entire healthcare system that tends not to see families like mine. I’m a proud…

As a mother of a child with a form of Batten disease, every day is a fight — not just against the disease, but against a system that wasn’t built to protect rare children, especially those from underserved Latino communities like mine. I never imagined I’d become a voice for…

Being sick is hard, no doubt about it. But being sick while parenting JuJu, my son who battles CLN2 disease every day, is a fight on two fronts. There’s no pause button, and there are no shortcuts. My heart stretches further than I ever thought it could. JuJu…

Every morning, I look into my son JuJu’s eyes and see a fire that no diagnosis can dim. He’s 8 years old and full of light, love, and resilience. JuJu has a rare neurological condition called CLN2 disease, also known as late-infantile Batten disease. It affects his speech, movement,…

I remember the exact moment my world changed. It happened in 2022, on a day that started like any other but ended with a diagnosis that shook me to my core. The doctor’s words blurred together, my heartbeat pounded in my ears, and a wave of emotions crashed over me,…

I don’t recall the exact moment I sensed something was different about my son, Juju, but a mother’s intuition often whispers truths before they become evident. Before doctors ever uttered the words “CLN2 disease” (also known as late-infantile Batten disease), I was concerned. Juju, now 8, was a vibrant…

Among the everyday chaos, I often pause to reflect on what it means to be a caregiver for my son, Juju, who bravely battles CLN2 disease, also known as late-infantile Batten disease. At just 8 years old, he’s not only my child but also a true warrior facing a tough…