My sister Ava is a force of nature—part hurricane, part trailblazer, all heart. To the world, she is an advocate, an athlete, and a scholar. To me, she is my older sister, my best friend, and my personal GPS for navigating life’s curveballs. From the moment we began playing together, I watched her tackle obstacles like a determined action hero in a blockbuster movie, minus the dramatic slow-motion effects (though they would be well-deserved). When something was out of reach, Ava didn’t accept defeat, she found a way to get to it, whether it was a toy under the couch or a goal that seemed impossible.
Born with Nail Patella Syndrome (NPS), Ava has spent much of her life adapting, pushing through pain, and proving that “limitations” are just suggestions, not rules. Her medical chart is practically a novel at this point, filled with orthopedic visits, nephrology appointments, and physical and occupational therapy sessions. And yet, she takes it all in stride—no complaints, no “why me?” moments—just pure, unfiltered determination. If resilience were a sport, she’d be a Hall of Famer.
Her presence in my life has been nothing short of transformative. Through Ava, I’ve realized that perseverance isn’t about simply enduring hardship; it’s about flipping it on its head and making it work in your favor. I’ve watched her play basketball, soccer, and fast-pitch softball with the kind of tenacity that makes coaches simultaneously overjoyed and terrified. While others might take a bad day as an excuse to quit, Ava treats setbacks like speed bumps (annoying, sure, but nothing that’s going to stop her from getting where she’s going).
Beyond her personal achievements, Ava is basically the unofficial spokesperson for rare disease awareness. She’s given speeches, met with elected officials, and rallied entire communities to recognize World Rare Disease Day—all while now dedicating her time to working at The Sensory Studio, helping others, and pursuing a career as an occupational therapist. Her ability to turn advocacy into action is something that has completely reshaped medicine. She’s inspired me to dedicate my life to understanding conditions like NPS, helping individuals who, like Ava, do not just see a diagnosis, but a person. A person with dreams, ambition, and the drive to make a difference in others’ lives.
Ava’s influence on me isn’t just about admiration: it’s about transformation. It is because of her I think differently, push myself harder, and approach my goals with the same “watch me do it” energy that she brings to everything. She’s set the bar high: Not just for excellence, but for living a life that actually means something.
The ink-stained pages of my life are filled with lessons from Ava. Just like my smudged handwriting is a testament to the chaos of my thoughts, her journey is proof that success isn’t about a smooth path—it’s about charging forward, roadblocks be damned. The path ahead of me is one I will walk with purpose, fueled by the example she has set. Ava’s legacy is still unfolding, and I am beyond grateful to be part of it. More importantly, I am honored to carry forward the values she has instilled in me: determination, confidence, and an unshakeable belief that, no matter the obstacle, where there is a will, there is always a way.