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…
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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On our FA journey, everyone has something to offer
As the lecturer’s voice echoed in the large hall, I sat nestled between friends. This was a lifetime before my 12-year-old daughter Amelia’s diagnosis of Friedreich’s ataxia (FA), and before I was gearing…
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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…
A Christmas wish for an FA treatment our beloved kids can take
The magic of the season belongs to children — their laughter, joy, and beaming smiles. Though the pediatric population isn’t always seen at events for Friedreich’s ataxia (FA), their value and presence…
My daughter with FA dreams about reversing her disease progression
A nearby candle slowly cloaked the room in the scent of a Christmas tree while my 11-year-old daughter, Amelia, and I sloshed through her homework. My phone lit up with a new memory notification,…
How incorporating new tools and interventions has helped our family
As my grandpa always said, “You need the right tool for each job.” Despite this, I always turn to the same tools out of habit when working around the house. My vise grip…
Reclaiming my daughter’s lost childhood due to FA
When our daughter Amelia first started showing symptoms of Friedreich’s ataxia (FA) and we headed off on our diagnostic odyssey, something else important happened: The laughter was sucked out of…
How I’m setting personal boundaries this holiday season
Here come the holidays! This magical season that brings people together amid specific traditions, unrealistic expectations, and uncomfortable conversations has been the source of so many Hollywood hits. Then enters Friedreich’s ataxia (FA),…
Actionable ways to celebrate National Caregivers Month
After 15 minutes on hold, I hesitantly opted for a callback when an operator was free. Though I am sure this feature was created with the best intentions, it is a one-time pass. Meaning…
6 simple tips to get the most from the complex systems we rely on
I love systems. From a professional standpoint, they fascinate me. I spent 20 years working as a social worker within a large system where I “grew up” professionally. Even when that system was frustrating,…
