At twenty-four years old, I’m learning to walk for a fifth time. It feels surreal that I used to be a national-level athlete, running across finish lines, flying over jumps on horseback. At the time, I was confident my body would always be my strength. I never thought the day would come when merely standing up would be a victory.
I have lived for seven years with a rare bone disease called Fibrous Dysplasia with McCune Albright Syndrome-a condition so rare, only a few individuals are afflicted by it in the world. It turns normal bone into fragile, fibrous tissue, causing deformities, fractures, and constant pain. In my case, it has attacked my right leg and pelvis the worst, bending the bones until walking became impossible at times.
My parents first suspected something was wrong when I was a baby. I had one leg longer than the other, but no doctor could explain why. I was running in a field when my femur suddenly snapped the strongest bone in the body, broken in an instant. I was ten years old. That’s when we finally got the diagnosis. Soon after, I caught a severe MRSA infection in the hospital and spent weeks in isolation. Yet as soon as I could, I was back on a horse. I always push my limits, maybe too far, but it’s what made me feel alive.
Into my teens, the bones continued to break, but I would not slow down. Running was my passion: I dreamed of competing professionally. At sixteen, though, I began to lose my ability even to run, and soon even walking became quite an ordeal. I faked it. I told friends my limp came from an old injury. I couldn’t face the truth that my body was changing in ways I couldn’t control.
When I was nineteen, I lived in the French Alps for a winter season, pursuing adventure just as my mum had done. It was everything that I wanted, but my body was unable to keep up. I skied and worked long hours, clinging to the bar counter to stay upright, but when my shifts were over, I couldn’t even walk home. With each trip, I left with new fractures and deeper shame. I just wanted to feel normal again.
By twenty-one, I’d dropped out of university and lost the ability to walk for over a year. My femur had become so bent and weak that it finally snapped while I was in my kitchen. As strange as it sounds, that was the turning point-the beginning of healing. I underwent an eight-hour surgery to rebuild my leg. I lost more than 80% of my blood and spent weeks fighting to recover. But when I finally stood again, I felt like I’d been given a second chance.
Six months later, I was able to walk without crutches. I began making macramé pieces during recovery and turned that into a small business, Arla Crafts. For the first time in years, I felt proud of myself again.
But the disease wasn’t finished with me. My lower leg began to bend and fracture, and I had to face yet another major surgery. In 2020, in the middle of the pandemic, my bones were broken and reconstructed once more. The recovery was lonely, but I made it through.
Today, I’m learning to walk again – slowly, painfully, but with hope. I’ve stopped mourning the life I lost and started embracing the one I have. I no longer hide my limp or apologize for my disability. Walking-even with a limp-means freedom, and that’s something I’ll never take for granted again. People tell me I’m an inspiration. I don’t know about that. I do know this: life doesn’t end when your dreams change-it just takes on a new form. If my story can help even one person with a rare disease feel seen, then all the pain, all the surgeries, all the scars-they will have meant something. Because I’ve learned that strength isn’t about medals or speed. It’s about standing up, again and again, no matter how many times life tries to break you.
