A Mother's Dream to Rise Above — Cristina Vargas

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…

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…

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,…

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…

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…

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…

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”…

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…

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…

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…

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.