Columns

As a parent of a child with late-infantile Batten (CLN2) disease, I’ve found it’s important to prioritize not only their physical care, but also their mental well-being. Coping with the challenges of this rare genetic disorder can be overwhelming, but several tips and strategies can help create space…

My dear Juju, Just as a butterfly is inspired by the beauty of a flower, I am inspired by you, my son. Your strength and resilience, despite the challenges you face from late-infantile Batten disease (CLN2 disease), have transformed my perspective on life. Like a butterfly emerging from…

Since 2019, I’ve penned “The Long Sprint,” my Batten Disease News column dedicated to informing and inspiring people affected by rare disease. Now, nearly five years later, it’s time for me to say farewell. My sister, Taylor, was diagnosed with CLN1 disease (a form of Batten…

Have you ever had the perplexing experience of opening a book and seeing it blank? The pages should include some relevant material, but all that’s present is emptiness. I experienced that sense of bewilderment and ambiguity when at last I realized the truth about what my son, Juju, was facing.

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 fastest blindfolded half-marathon. This effort, intended to honor the legacy of my late sister, Taylor, will…

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…