The important message about FA that my daughter found on a T-shirt

I like to travel. Being able to quickly pack up and leave is something I enjoy. It’s also a skill I developed in my two daughters, Katherine, 14, and Amelia, 12. They have known how to pack since they were little. I love this level of independence about them. This doesn’t mean we’re leaving the house quickly, but at least we’re ready to do so.

So it was no surprise that Amelia, who has Friedreich’s Ataxia (FA), packed her gym bag and had it ready for the summer camp days before she had to leave. Her dad double-checked her selections to make sure she had everything on her list. That included brightly colored shirts from last year’s camp that Amelia likes to wear as a reminder of a place she loves.

But this column isn’t about the camp or these particular t-shirts. It’s about another t-shirt.

After loading Amelia’s walker and bags into the car, my husband, Ryan, was on duty to walk her to the car. I closed the trunk in time to see Amelia walking towards me holding her dad’s hand and wearing her rideATAXIA t-shirt from last year’s event in Philadelphia.

During our long drive to camp, Amelia talked about how excited she was, who she hoped to see, and all the activities she did and didn’t want to do. Finally, unable to help myself, I asked Amelia why she chose to wear her rideATAXIA shirt to camp. Amelia tends to be very intentional about her clothing. She always wears things for a reason and my curiosity was piqued.

His answer was simple: “I belong to them.”

What it means to belong

I could talk about the value of belonging from a social work perspective (because my profession always seems to blend into my daily life), but instead, I’m just going to be a mom. As such, I want both of our daughters to feel like they’re part of something bigger than themselves. That there are individuals who claim them as part of their community.

Amelia struggled to fit in when she entered kindergarten. She was excluded from games on the playground and found herself at the end of the queue when moving from one room to another. Despite the best efforts of caring adults, it was a challenge. We heard about it every day through tears during the first few years she was in elementary school.

That’s why we attend events sponsored by Friedreich’s Ataxia Research Alliance (FARA). I want Amelia to know that she is part of a larger community, a “Family”. When we attend rideATAXIA events, we do more than raise funds and awareness; we build relationships.

Next week, a small group of people, including Kyle Bryant and former News on Friedreich’s ataxia Columnist Sean Baumstark, called Team Himalayas (part of Team FARA), will be cycling the world’s highest paved road. Our family will be keeping an eye on their progress and cheering them on from afar.

We’ll also be wearing our rideATAXIA shirts with the FARA logo — not only because we believe in the hope behind the logos, but also as a reminder that these groups are the ones we belong to. Have a good trip, Team Himalayas. Our thoughts, prayers and dreams travel with you.

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 other qualified health professional 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 on issues relating to Friedreich’s ataxia.