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“Mom, come look at Amelia! It’s hilarix.” The gap-toothed smile of our then 6-year-old warmed my face, as did her inability to pronounce the word hilarious. I peeked around the door frame and immediately understood the complexity of what I was witnessing. Her younger sister, Amelia, then age 4, was…

When I was diagnosed with Friedreich’s ataxia (FA), I was obsessed with gathering research and other information to arm myself with anything that might prepare me or give me a slight advantage as I attempted to combat what the disease would do to my body. Although I can…

I’m no cartographer, but the adventurous part of me has always awakened when I hear about the saying supposedly inscribed on ancient maps: “Here be dragons.” Even though historians now believe that the phrase was only used on a single 16th-century globe, the rumor that most medieval maps warned…

As I stared at my fists gripping the steering wheel, I realized my muscles could not squeeze any harder. There was an absurdity here. I was white-knuckling my steering wheel, and my car was in park. The call that had sparked this reaction was still in progress. The medical professional…

I can’t put my finger on why, but lately, I’ve been thinking about how fragile and short life is. More than ever, I feel challenged to make the most of my time on earth. I’m sure everybody has a similar realization at some point. Whether we feel close to death…

It’s better late than never, but I finally figured it out — or rather, at last I admitted to myself that a certain pursuit was a complete waste, something that was draining and devaluing my personhood. And this time there would be no compromise: Social media was a dead end…

As I raised the phone to my ear, I immediately heard crying. My friend and former co-worker was on the way to a family emergency and was looking for help. As a social worker, I balance the need to be present in feelings while also knowing that sometimes there is…

I was diagnosed with Friedreich’s ataxia (FA) at age 25. Because FA is so rare, my neurologist had limited information to share with me. I’d never heard of the disease I’d now be fighting for the rest of my life, so I did what anyone would do: I…

When our youngest daughter, Amelia, was 5, she hung twine throughout her bedroom. Then she arranged blankets on top of the strands to create an elaborate tent with sections for rooms. I’d never seen anything like it. It was one example among dozens over the years of how Amelia looks…

When I explain Friedreich’s ataxia (FA) to people, I adjust my verbiage depending on who I’m talking to. If my children or their friends ask why I use a walker, I’ll explain that my legs don’t work very well and I use the walker to help me avoid falling…

Much like fingerprints, many experiences are similar at a glance but unique upon closer examination. This is especially true in the rare disease community. Although our conditions are very different, we have many things in common. This has been on my mind recently due to an unexpected source. My friend…

“So, does it ever get easier?” My eyes slid off the curly mop of brown hair belonging to a curious toddler and up to the questioning eyes of her mother. Pulled in by the pile of snacks my girls had left out on the picnic table, the 3-year-old had come…