I love to hike, and we did a lot of it – almost 80 miles’ worth – because it’s good for me, gives me a rush, makes me feel alive, and offers a nice view to boot. Sometimes, when I hike for distance or do a trail with a significant change in elevation, my competitive nature kicks in, and what began as a hike morphs into a quest. The harder the trail, the harder I push.

Perhaps I’m reaching here, but in a way, Batten disease does the same thing to me. I couldn’t have gotten a tougher challenge or one closer to the heart. As I jabbed my hiking poles into the high desert sands and climbed out of Fairyland Canyon in Bryce Canyon National Park last Tuesday (elevation change: 2,300+ feet), I thought about the obstacles that lie between me and the cure that could save my sister’s life. And there, in the steep canyon with the thin air, nearly 2,000 feet higher than the highest peak east of the Mississippi, I realized that in one very distinct way, the two challenges are the same: in both cases, I’m standing opposite nature. One stark difference, though, is the view. It’s not much to say that the impossibly blue sky and mysterious hoodoos of Bryce are easier on the eyes than the progression of the disease.

A memorable quote from a book I bought on Grand Canyon National Park comes from a park ranger and is exactly this: “The Grand Canyon wants to kill you.” And that’s exactly why many people try to conquer it each year – traversing the 21-mile trail down from the desert South Rim to the canyon floor and back up again to the alpine North Rim (a trail we did not do this time around but which sits near the top of our “pre-children to-do” list).

Batten disease wants to kill my sister – an effort that wants to kill the rest of us simply because we love her so much. But I’ll say this – those 80 miles over eight days didn’t leave me too weary to face my greater challenge. Back home on the east coast, I simply have to dig my figurative hiking poles into the North Carolina soil, plant my lead foot and keep climbing.