A Mother's Dream to Rise Above – a Column by Cristina Vargas

As Rare Disease Awareness Month gets underway, it’s a good time to reflect on health conditions that are too often overlooked, misunderstood, and forgotten. Rare Disease Day itself occurs on the last day of February, but for families living with them, awareness isn’t limited to a single day. Rather, it’s…

The year did not ease in gently for our family. January came in loud and demanding, reminding families like mine that a new year does not promise a clean slate. Instead, it brings more charts, more hospital rooms, and yet another recalibration of what normal looks like. The day after…

As Thanksgiving approaches, I find myself reflecting on the journey of parenting a child with a rare disease. Each day brings challenges that most cannot imagine, yet within those challenges lie moments of grace and milestones worth celebrating. Life with late-infantile Batten (CLN2) disease has taught me that gratitude…

There is a strength that comes from walking through the storm and still choosing to speak up. Parents of children with Batten disease know this kind of strength all too well. We live it every day through the sleepless nights, the hospital stays, and the uncertain tomorrows. When we…

When October rolls in, the world seems to transform overnight into something magical. Pumpkins glow on porches, kids giggle in costumes, and for a brief moment, life feels suspended in a cozy, candy-filled haze. However, for families like ours that are raising children with Batten disease and other complex…

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…