Columns

Every Batten disease parent learns that time is the most valuable thing we have. We stop measuring life by birthdays and holidays and begin measuring it by the memories we can still make before the disease changes everything again. Every smile, laugh, and hug becomes priceless. No amount of…

Every once in a while, my fingers betray my heart. Without even thinking, I’ll unlock my phone and instinctively open the bus tracker app, waiting to see my son Juju’s school bus make its way toward our house. It had become such a normal part of my morning routine that…

Dear Juju, A few days ago, I opened the column I hadn’t finished writing. It was sitting on my computer exactly where I’d left it. I’d been writing about your tremors getting worse and your upcoming infusion. I wrote about how Dad and I were doing everything we could to…

There is something about May that feels like a quiet exhale. After months of gray skies, heavy coats, and long nights, the sun begins to linger a little longer. The air softens. The world slowly wakes back up. For a moment, everything feels a little lighter. As a rare…

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…