The power of being present on this journey with FA
I both heard and felt the rumbling noise as the elevator jerked to a halt and I was plunged into darkness. Immediately I knew my error and was kicking myself. We were in the…
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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How creating a strategic plan is helping me navigate life with FA
I found myself growing uncomfortable as I stood in front of the group. Not because all eyes were on me as a presenter, but because I’d realized I was out of alignment. As the…
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…
The January to-do list includes financial planning for life with FA
It’s January, and despite the gray skies overhead and the lingering chill in the air, I feel a little more motivated to tackle the mundane tasks left on my to-do list. I’m starting with…
How I’m redefining my priorities in parenting a child with FA
I was 10 years old when I heard the crack of wood on wood that sent my croquet ball flying off into a cornfield. I turned to see my grandfather’s face flash a “gotcha”…
Being proactive when scheduling my daughter’s medical appointments
Holding the phone to my ear, I exhaled slowly before speaking into the receiver. I’d dreaded getting this appointment on our calendar and had been waiting on hold to talk to a hospital scheduler.
The 2024 FA Symposium gave me hope for the future of treatments
As I headed west down the familiar highway from Pennsylvania to Ohio, my mind spun as my eyes took in the autumn hues around me. After two amazing days at the 2024 Friedreich’s…
When it comes to clinical trials, our children deserve our courage
Staring across the table, I gave a reassuring smile to the student intern who was shadowing me that day. I mouthed “it’s OK” as heavily armored police moved through the home. We’d arrived at…
Why I’m deciding whether to homeschool my daughter with FA
I looked at both my hands and scoffed. The next 30 minutes were going to be interesting. I’m an incredibly right-handed person, to the point that my left hand is pretty much just along…
