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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…
As the new year dawns, I find myself reflecting on the hopes and dreams I hold for my child, who is bravely navigating the challenges of CLN2 disease, also known as late-infantile Batten disease. Each year brings a mix of anticipation and anxiety, and this year is no different.
As the mother of Juju, a brave boy who was diagnosed with late-infantile Batten disease (also known as CLN2 disease) in 2021, I’ve witnessed an incredible journey filled with challenges, resilience, and hope. He’ll turn 8 years old on Dec. 19, and as I reflect on those years, I…
As Thanksgiving approaches, the air is filled with a sense of warmth and an invitation to reflect. This time of year invites us to pause and appreciate the little things that make life beautiful, even amidst the challenges we face. Our family, though small, is tightly knit, and this…
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