Summer can be a dangerous season for those with heat sensitivity
Summer is here! In our home, that means fun things like trips to the pool and sleeping in. It also requires us to constantly be careful about the temperature in our house and keep…
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.
Featured Post
Getting out of debt was key to managing Friedreich’s ataxia
Everywhere I look, I see advertisements on billboards, computer monitors, and even at the pump telling me what I should buy and how I’m missing out on having certain things. We are bombarded by…
Read more
FA reminds me I still have a lot to learn about navigating differences
From the moment I moved out of my childhood home, traveling became a passion of mine. It wasn’t just about seeing new places or tasting unique cuisine. (Well, maybe food had a little to…
It’s not ‘3 strikes and you’re out’ when dealing with FA
I have two children who are incredibly different. One is outgoing, and one is shy. One likes to go with the flow, and the other came into this world with strong opinions. One has…
The important message about FA my daughter found on a T-shirt
I love to travel. Being able to pack up quickly and go is something I value. It’s also a skill I’ve fostered in both of my daughters, Katherine, 14, and Amelia, 12. They’ve been…
My optimism is taking off with new Friedreich’s ataxia clinical trials
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.
Facing my fear of inadequacy while parenting a child with FA
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…
Why raising awareness can be more complex than we might realize
“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).
What I focus on when addressing my daughter’s mobility challenges
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…
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…
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…
