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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…
This time of year holds a special place in my heart and fills me with gratitude, determination, and a deep sense of purpose. Rare Disease Awareness Month, observed every February, isn’t just a time to reflect on my journey as a mom. It’s also an opportunity to consider how I’ve…
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