Columns

More than 17 years have passed since the sweltering July day of my sister’s CLN1 disease diagnosis, so please forgive me for what I’m about to say: I’m losing patience in the fight against Batten disease. I’m a distance runner with more than 40 half-marathons to my credit.

I’m planning a trip to Walt Disney World — also known as the most magical place on Earth — for my son. Jack will be 5 years old when we wander the enchanted grounds of Disney’s Magic Kingdom and Epcot parks, and I’ve spent more minutes than I care to…

Motherhood is one of the most common yet profound experiences of human life. It’s the most difficult and best thing I’ve ever done — my 4-year-old son serves as a constant reminder. And yet, for mothers of children battling a rare disease, the journey takes an extraordinary turn. I lost…

I’ve suffered from migraine headaches since childhood and cluster headaches for most of my adult life. While migraines and cluster headaches are often confused, they’re different conditions. However, both types of headaches can have a significant impact on quality of life. But how have chronic headaches affected…

I celebrated a birthday toward the tail end of Rare Disease Week, matching my mother’s age on the sticky summer night when she brought my sister, Taylor, into the world. It’s been decades since our family of four became a family of five, and yet I haven’t forgiven my…

In January 2022, I had major surgery on my left ankle. Afterward, I spent the better part of a year relearning the simplest mechanics of walking and, later, running — the sport that saved my life when my little sister was dying from CLN1 disease (Batten disease). That’s why…

My husband and I are renovating our primary bathroom and have been using the Jack-and-Jill bathroom down the hall since early December. The Jack-and-Jill bathroom’s scant coastal decor features a small shelf filled with sweet-smelling soaps, bath beads, and a beach-inspired picture frame. Behind the glass, three women sit on…

I’ve always loved the Christmas season. But Christmas, like other holidays, can be hard because it delivers a stark reminder of what — and whom — we no longer have. And I can’t help but think about the fact that this will be my fifth Christmas without my sister.

Have you ever celebrated Thanksgiving without turkey? Maybe you don’t like the taste of America’s famous game bird, or perhaps it’s just not worth the work. But what is Thanksgiving — a holiday focused on food — to someone who can’t eat? More than four years after her death, I…

My sister, Taylor, always loved All Hallows’ Eve. But the beginnings of blindness hampered Halloween fun almost a year before we knew she had CLN1 disease, or Batten disease. I remember that crisp, cool autumn night in 2005 almost like yesterday: Taylor often stumbled while trick-or-treating and occasionally…