During a recent layover at O’Hare International Airport in Chicago, I learned some unexpected news about an upcoming pediatric clinical trial for Friedreich’s ataxia (FA), the disease my 12-year-old daughter, Amelia, has. My flight to Chicago had been delayed by weather, which I find curious because the climate…
Recalibrating — Elizabeth Hamilton
Ohio native Elizabeth Hamilton felt her world flip when her younger daughter’s health unexpectedly declined. It took six hospitals in five different cities and three states to obtain the diagnosis of Friedreich’s ataxia in 2020. A licensed social worker, Elizabeth believes that relationships are a healing force, and most problems can be solved if you have the right tools and the right people. Life takes unexpected turns, so we must take a moment to reexamine where we are and recalibrate.
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“Is it something sad?” Amelia always asks this question when I tell her we need to talk. Like an anxious employee worried about being in trouble with the boss, Amelia fears hearing sad news. My beautiful 13-year-old daughter, who has Friedreich’s ataxia (FA), has a very sensitive heart. Usually…
The pig was supposed to fly, but fear was holding her back. One summer night several years ago, I was watching the movie “Sing 2” with a child tucked under each arm. Both of my daughters were encouraging the character on screen to jump. Rosita, who my girls were…
“I know you!” The stranger’s surprise utterance greeted me at the elementary school of Amelia, my youngest daughter, who’s now 12. It happened years before she was diagnosed with Friedreich’s ataxia (FA). This type of encounter happened occasionally: A random stranger would recognize me, which caught me off…
The smooth, yellow rivets on the school bus caught my eye as it pulled up to pick up my 11-year-old daughter, Amelia. How often had I stared at them and not seen them? Then I noticed the grinning face of a young child waving at me through a window of…
“It’s not accessible enough.” That thought passes through my mind regularly as I look at the world. Not because of my younger daughter, Amelia, who has Friedreich’s ataxia (FA), but because of my mother. I’ve never fully understood my mother’s disability, and neither have many of the medical…
“Nope, not the same.” I’ve been saying that a lot recently. It might be my age. But it could be that I’m tired of the metaphorical yardstick we all seem to use, drawing comparisons between life experiences. Either way, I’ve been speaking and owning more of my truth about parenting…
I’m going to own it: I started 2024 with great ambition to work out more — followed by a fantastic lack of follow-through. My goal was to run a 5K race in the summer. I bought new shoes and started training, but after a few weeks, I struggled to find…
My 11-year-old daughter, Amelia, has Friedreich’s ataxia (FA), and the impact it’s had on her body and our lives has its own gravitational pull. As is the case for most people managing a chronic disease in their family, FA is always present, even when it’s not the conversational centerpiece.
It started as a simple question on our car ride home. “If you had a time machine, where in time would you visit and why?” The answers included typical kid responses — dinosaurs were mentioned — but my 11-year-old daughter Amelia’s quick statement made me catch my breath. She…
The rare disease community is full of unknowns. Due to the lack of research for many conditions, we often face uncertain outcomes or futures. Friedreich’s ataxia (FA) is no different, full of various symptomatic possibilities as it affects people in unique ways. As I talk and compare…
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