How my mother prepared me for my daughter with FA
“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…
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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How the slogan ‘Show Your Stripes’ took on a new meaning for me
I loved pop-up books as a child. The pieces that moved — delicate structures jumping off the page — captivated me, as did finding all of the flaps with hidden pictures. So it was…
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Why I now push back against a faulty comparison to FA
“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…
How FARA brings together exercise, fundraising, and advocacy
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.
Why my life needs trigger warnings, and maybe yours does, too
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…
Advice for my past self on managing my daughter’s medical journey
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…
A tribute to social work, the field that shaped and now supports me
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…
Rare Disease Day in a leap year keeps focus on the rarest of the rare
Though I love to travel, I sometimes struggle with maps. I often need clear clues and landmarks to prevent my brain from going to mush. I benefit from talking through the directions with a…
How Friedreich’s ataxia complicates even the most simple tasks
What do my email inbox and toothpaste have in common? They both have started to wear me out. I always prided myself on my tenacity and work ethic. I knew how to hustle, get…
Why I’m not afraid of awkward conversations anymore
I saw the smile on the face before me tighten as the words from my mouth registered. I needed to duck out of the gathering early to go home and care for my 11-year-old…
Face to face with a brick, I reflect on my role as parent and caregiver
The cold, rough surface of the bricks beneath my cheek snapped me out of my shock. I had passed the fallen fire-pit lid in our backyard numerous times with the boomerang thinking that someone…
