A Mother's Dream to Rise Above — Cristina Vargas

There is a moment that happens after every appointment, infusion, or procedure that people don’t see. From the outside, it may seem like the hardest part is over. The appointment may have gone well, or the treatment may be done. There may be a sense of relief, even if it’s…

When we talk about Batten disease, we often focus on what can be seen: the seizures, the regression, the loss of speech and vision. While these things should be acknowledged, the emotional weight shouldered by caregivers, which often goes unseen, also deserves to be discussed. Caregivers manage…

When I think about March, I think about transition. It’s not fully winter anymore, yet it’s not quite spring, either. The air shifts, yet the cold lingers. The sun shines a little longer, but the ground remains hard. March teaches us something powerful: that growth can begin before anyone sees…

February is often associated with love: hearts in store windows, sweet messages exchanged between couples, and a reminder to cherish the people closest to us. For rare disease families like ours, February carries another meaning: Feb. 28 is Rare Disease Day. The entire month becomes a time when the…

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…