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My Story

My struggle with Perthes Disease

"Many years later, 11 hrs and 165 miles down the road, I had just cycled a crossed the entirety of my home state in single day. It was a deep satisfaction that can only come from scratching a childhood dream. It was the same satisfaction that carried me home the first time I flew an airplane by myself over my home state of Indiana."

My Story: Text

As we rode back to our small town in northern Indiana after I had seen a specialist at Riley's Hospital in Indianapolis, the reality of my situation began to sink in. The doctor was looking for kids under the age of 9 with well-intact hips, still mostly round, who would be disciplined enough to not put weight on the affected leg and do specific non-weight-bearing exercises three times a day, every day. The alternative was a total hip replacement. Even if the treatment worked, a total hip replacement might still be necessary. The thought was overwhelming, but at least there were answers, and my parents finally believed me. Every day from then on would involve crutches and exercise, and every so often I would have an x-ray to check for good or bad news. As an active 8-year-old boy, my physical world was turned into more of a cerebral existence almost overnight. This had all started nearly half a year earlier. The day before, I had been playing with friends, but the next day, I woke up with pain in my hip. This was really the starting place of my struggle with Perthes. That day, just like any other day, was the exact day it started. It was day one, and I didn't even know it. Looking back, I had no idea what the future held for me, and I'm glad I didn't. It would have been overwhelming.   

I would go on to see many doctors in the span of nearly 6 months before a diagnosis and method of treatment came. I would have to deal with one parent consistently not believing me and accusing me of lying. I would have to deal with the other parent believing me sometimes and on other occasions not. I sat out a lot of activities while I watched my friends play outside. In time, I would adapt and could run on crutches while still not putting any weight on my leg. I turned to books like Robinson Crusoe and Treasure Island. For the first time in my life, I focused on learning and developed an insatiable appetite for all things science and history. I dreamed of flying airplanes someday and riding bicycles as far and as fast as I could. Some day I would get the chance to do just that. Many years later, 11 hours and 165 miles down the road, I had just cycled across the entirety of my home state in a single day. The first time I flew an airplane I was overjoyed. I would also have to relearn how to walk and run after not doing so for a year. 

I consider myself lucky to have found a deeply rooted love for reading. The enthralling tales of far-off adventures, such as Moby Dick, Robinson Crusoe, Treasure Island, and Adventures of Huckleberry Finn, took me to places that my physical self could not. Reading played a significant role in my mental well-being and survival.

After a year had passed and another visit to Riley Children's Hospital, I made my way into the doctor's office on crutches to discover my fate. Following an X-ray and a few tests, the doctor declared that the treatment had been a success. He instructed me to leave the crutches behind and walk down the hall. For the first time in over a year, I, a boy who was now 9 and 3/4 years old, took his first steps and nearly fell flat on his face. Despite my strong limp, weak leg, and resemblance to a newborn baby deer, there was nothing that could have stopped me from reaching the end of that hallway.

I consider myself fortunate. Although medical treatment for Legg Perthes has advanced over the years, some children still require full leg braces or wheelchairs to stabilize their hip. In some cases, children may need to wear braces for up to three years and undergo multiple surgeries. In the worst-case scenario, a complete hip replacement may be necessary.

My Story: Text
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