The Long Sprint
— Laura King Edwards

I have big news to share this month: I’m making a movie! If you regularly read my column, you’ll already know that in December, I’ll attempt to break a world record for the…

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…

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…

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,…

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…

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…

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 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…

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…

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…

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…