Columns

My hair is finally the way I like it. In the world of Friedreich’s ataxia (FA), I celebrate every little victory that comes my way. I grinned — cheesily, vainly — as I rubbed an almond-sized glob of men’s hair gel between my fingertips and worked it into the…

I am a work in progress, just like everyone else in this world, so I need to give myself grace. The meaning of grace is essential. Several of my columns, including the previous one, have drawn the conclusion that I should grant myself grace. I wanted to further…

I have been attending a leadership training for people with rare diseases. The training is fueled by fierce moms trying to pave the way for their children to live in a better world full of cures. I am envious of those kids. As a preface, I must say that I…

When our daughter Amelia, 13, was diagnosed with Friedreich’s ataxia (FA) five years ago, I started doing the math. Like other parents, we’d been told that most people diagnosed with FA will need a wheelchair within 10 years after symptoms appear. This, of course, depends on the speed…

Last week, I took a slow-motion fall. While transferring from bed to my wheelchair, I tried to reach for something — so I could be quicker — and landed on the floor. I am no longer able to transfer from the floor to my wheelchair. Wendy, my service dog, can…

I’m a regular at my gym. Because of transportation issues — a story for another column — I didn’t get there for about three months. Last week was my first week back. So I had to mentally prepare myself for the questions coming my way: “I haven’t seen you in…

I’m a firm believer that life should be celebrated. I love decorating the house for holidays, birthdays, the first or last day of school, and anything else that provides my family with an excuse to get excited about life. It helps to break the monotony of our weekly routine and…

There’s a distinct stillness in waiting — a breath held between hope and reality. As I’m writing this, my May 13 appointment is approaching, and I find myself suspended in this limbo, where the future teeters between two possibilities.​ Living with Friedreich’s ataxia (FA), where progression often feels…

I was transported to a joyful memory while listening to the radio a few days ago. I’m in the home where I grew up, and it’s sunny and cheerful. My sisters, Lisa and Tricia, and I are dancing around the living room, yelling first “I will get by, I will…

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 up for a life of service, first as a volunteer and then as a social worker.

May is always a hectic month for my family. With school functions and class parties, youth sports, birthdays, Mother’s Day, and the approach of summer, life moves quickly this time of year. While part of me can hardly believe that the school year is already coming to a close for…

About 11 years ago, I visited Voyager Therapeutics. The company was, and still is, working to develop a gene therapy for my disease, Friedreich’s ataxia (FA). My dad joined me on that visit, and we were overwhelmed by the care, respect, and kind curiosity we were shown. It was…