Rare, Resilient, Radiant: A Tribute to Harper and Rare Disease Day 2025

A little girl in a white dress is sitting on a rock with mountains in the background.

By Amber Reynolds


Today, we celebrate and honor all the incredible individuals living with rare diseases, including our amazing Harper.  


Harper was born with an ultra-rare syndrome, Okur-Chung Neurodevelopmental Syndrome (OCNDS). She is 1 in 300 in the world diagnosed with this condition—a true gem among us. But what makes her truly rare goes far beyond her diagnosis. 


Harper is a light in this world, seeing life through her own beautiful, rose-colored glasses. She is pure joy wrapped in sass and smiles. Harper doesn’t just live life—she embraces it with courage and a spirit for adventure: 


  • She skis with fearless determination.
  • She’s always on the move—never sitting down, ready to conquer whatever comes next.
  • She loves her friends deeply, sharing moments of laughter and connection.
  • Baths? They’re her ultimate happy place!
  • She is empathetic, athletic, and absolutely unstoppable.


Harper doesn’t watch TV or movies—she’s too busy soaking in life and showing the world what true happiness looks like. Her energy, love, and unstoppable spirit remind us every day that rare is beautiful.  


To Harper and the entire rare disease community: today, we see you, honor you, and stand with you.


#RareDiseaseDay #OCNDS  #RareIsBeautiful