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Doing what is necessary as my FA symptoms progress

The Friedreich’s ataxia (FA) transition I have dreaded for over a decade is approaching, and I am beyond overwhelmed. Despite my best efforts, adaptations, precautions, hopes, fears, and routines, I think the transition to a wheelchair is right around the corner. You might be asking, “Why do you…

Feeling frustrated is a regular part of my life with FA

I’ve encountered many sources of frustration over the course of my 41 years with Friedreich’s ataxia (FA). I chuckled to myself as I wrote that line. “Many sources of frustration” seems like a vast understatement. For example, when I was 9 months old, I could walk. I know I…

An open letter to parents whose children have FA

As our parents know, those of us with Friedreich’s ataxia (FA) persevere through all of the challenges life throws our way — and there are many. I’m proud to belong to a group of such scrappy and fierce people, even though none of us would’ve chosen to live this…