Learning how to recalibrate when life brings unexpected changes

I had to bite my lip to keep from screaming as I watched my 14-year-old daughter, Amelia, who has Friedreich’s ataxia (FA), roll onto the basketball court. I’m constantly navigating a fine line between being a supportive mom and an embarrassing parent. Amelia is a teenager, after all.

Her team’s score was up, and the clock was running down. This would be my daughter’s first win. She got herself into position as her teammates yelled, “Let’s go, Hollywood!” I’ve grown to love that nickname for her, but it was inspired by something that initially devastated me: a pair of sunglasses.

Everyone’s diagnostic journey is unique. Our concerns escalated when Amelia began experiencing balance issues and retinal deterioration at the age of 5. I’ll never forget the conversation I had with a doctor after a terrifying round of tests, during which I learned that Amelia had lost part of her vision and there was nothing we could do to repair it. When I asked what preventive measures we should take to maintain what she had, the response was that she should wear sunglasses.

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Amelia Hamilton plays basketball in February 2026. (Photo by Elizabeth Hamilton)

Soon, we had pairs everywhere — in the car, at the front door, lost under couches. It’s easy to tell a 5-year-old to wear sunglasses when it’s bright outside. It’s much harder when it’s an overcast and cloudy day. We constantly nagged her about it, which sometimes left her feeling frustrated.

Fast-forward several years, and Amelia’s FA symptoms continued to progress. I wanted to do more than just protect her eyes; I wanted to ensure that she had a beautiful and inspiring life. Part of that was finding something she loved to do to keep her body strong.

I grew up playing sports. I loved the feeling of sharing a look of determination with my teammates as we pushed our bodies to the limit. I knew what it was like to struggle through losses and celebrate wins with a group of people who had my back. I desperately wanted that sense of inclusion, belonging, and pride for Amelia.

After a lot of brainstorming and a few years of trying random activities that didn’t quite work out, I found a wheelchair basketball team. Amelia was initially hesitant, but that quickly changed when her coaches rolled into her life.

Finding the possibilities

I got more than I ever could’ve hoped for with this team. Over the months, Amelia started to transform, becoming more confident and outspoken. (Not that she ever needed much help with that latter one, though!) Watching her participate and seeing the team huddle up with their hands overlapping on each other’s wheels was a profoundly powerful experience.

As for the name “Hollywood,” when she drifted into practice with her shades on that first day, the name just rolled off her coach’s tongue. The patient who needed sunglasses to protect her fading vision became an athlete reclaiming that medical necessity as a cool persona.

Coaches Rachael and Doug Dumas chat with Amelia Hamilton on the basketball court. (Photo by Elizabeth Hamilton)

Watching her team win the game that day wasn’t about the scoreboard. It was a victory of possibilities, a reminder that there are more opportunities in life than I could’ve dreamed of for a child with a progressive, degenerative disease. I just needed determination to find them when the possibilities arose.

This is my final column for Friedreich’s Ataxia News. It has been such a gift to share this space with you. I want to end as I began, celebrating the kindness of strangers. Years ago, someone we had never met decided to create this wheelchair basketball team. He didn’t know the specific people this team would eventually serve, but here we are, fundamentally changed for the better because of the effort.

My wish for you is that many incredible, caring, and uplifting strangers will come into your life. If you ever see me at a Friedreich’s Ataxia Research Alliance event, please say hi. I’d love to get to know you. In this FA community, we’re never truly strangers. We’re simply “FAmily” members waiting to exchange names.

Life will always bring unexpected changes. When they arise, we take a deep breath, reassess, and recalibrate.

Thank you for being here.

Note: Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.