Learning from Lyra
When my children were growing up, I didn’t keep candy in the house. They never had soda, and sugar cereal was reserved for one day a year — on their birthday, when they could pick out one box and a pack of fruit roll-ups. It was my way of teaching them early that sugar isn’t meant to be an everyday food.
That same philosophy shapes how I participate in local parades. While most floats toss candy, I hand out trinkets I’ve collected throughout the year — pencils, rulers, pens or bracelets from different conferences. My husband teases me for saving these odd items, and I’ll admit I had nearly convinced myself to stop. After all, it’s easier to buy a bag of candy and toss it out the window, watching kids dive into the road. Maybe people thought my hand-delivered pencils were strange. But something in me held back from giving it up this time, and I’m glad I did.
At this year’s African American Heritage Parade, my friend Bella Poffenberger joined me. We didn’t just toss things into the crowd; we walked up and placed them directly into children’s hands. The next day, I received an email that put my small tradition into a much larger perspective.
A mother wrote to thank us, explaining that her daughter Lyra, age seven, has Prader-Willi syndrome, a rare genetic disorder. Because of her condition, Lyra can’t eat sugar, and her muscle weakness makes it hard for her to scramble on the ground with other kids for candy. But when Bella handed her a slap bracelet, Lyra lit up. For once, she wasn’t excluded from the fun. She felt seen.
The mother copied Lyra’s advocate, Destiny Pacha, on the email, who later sent me a children’s book she had written, “It Starts With Hello.” The book explains in simple terms what life is like for children with Prader-Willi syndrome — constant hunger, dietary restrictions, low muscle tone and the social isolation that often comes with these challenges.
Prader-Willi syndrome is rare, affecting about one in 15,000 births. Children are born with low muscle tone and feeding difficulties, but as they grow, they face an entirely different struggle: an unrelenting hunger caused by how their brains regulate appetite. Without strict dietary control, they can quickly develop life-threatening obesity. Many also experience developmental delays, learning difficulties and emotional challenges. Most people have never heard of it, and that lack of awareness can make families feel invisible.
That’s why Lyra’s mom’s letter struck me so deeply. I’ve written before about sugar and the impact of excessive carbs on children, especially in school lunches. But this was different. This was about belonging. A simple bracelet became a bridge for a child who otherwise might have been left out. And what Lyra’s mom didn’t know was how much her gratitude meant to me, too. It confirmed that even though my way is different from most participants of parades, it’s worth continuing.
I later shared Lyra’s story at a school board meeting. To my surprise, her mother was watching online and thanked me again. Even our superintendent admitted he had never heard of Prader-Willi syndrome. That moment showed me how easy it is for rare conditions to slip through the cracks of community awareness, even in schools.
Prader-Willi syndrome may be rare, but the lesson it teaches us is universal: inclusion matters. Sometimes that means thinking beyond candy at parades. Sometimes it means asking how our schools, our events and our communities can be welcoming to children with unique needs.
What I learned is that small choices — a bracelet instead of candy, a mention at a meeting, a simple hello — can have an outsized impact. They tell every child, “You belong here.”
Donna Joy, of Shepherdstown, is in her second term on the Jefferson County Board of Education. Her comments are personal, and do not represent the Jefferson County Board of Education as a whole. She can be reached at aumpeace@msn.com.

