top of page

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

Riding back home to our small northern Indiana town after seeing a specialist at Riley’s hospital in the big city of Indianapolis is when my reality started to set in. The doctor was looking for kids younger than 9 years of age with a well intact hip, still mostly round, and the children would have to be disciplined to not put weight on the affected leg and to do specific non-weight bearing exercises 3 times a day every day. The alternative to the selected group was a total hip replacement. Should the treatment not be successful, a total hip replacement would happen anyway. The thought was overwhelming but at least there were answers, at least my parents believed me now. Everyday would be crutches and exercise. Every so often was an x-ray to check for good or bad news. I was a very active 8 year old boy and my physical world was turned into more of a cerebral existence nearly over night. This began nearly a half a year earlier. The day prior, I had been playing with friends and the next day I woke up with pain in my hip. This is really the starting place of my struggle with Perthes. This day, just like the start of 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 diagnoses 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 on out a lot of activities while I watched my friends play outside. In time, I would actually adapt and could actually 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 to fly airplanes some day and ride bicycles as far and as fast as I could. Some day I would get the chance to do just that. 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. 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 was fortunate to discover a strong love for reading.  The great tales of far away adventures such as Moby Dick, Robinson Crusoe, Treasure Island, Adventures of Huckleberry Finn and many more classics, took me to places that my body couldn’t go. Reading was a huge part of my mental survival. 

After a years time and another trip to Rileys children’s hospital, I crutched my way in to the doctor’s office to find out what my fate would be. After an X-ray and a few tests, the doctor declared the treatment was a success. He said for me to leave the crutches and walk down the hall. For the first time in over a year, this now 9 3/4s boy took his first steps and nearly fell right on his face. With a strong limp, a weak leg, and in newborn baby deer fashion, pending a complete building collapse, there wasn’t anything that was going to stop me from reaching the end of that hallway. 

I’m a lucky one. Despite advances in treatment for Legg Perthes, children are in wheel chairs and have full leg braces to keep their hip stable. Children can be in braces for up to 3 years, have to have multiple surgeries, or worst case, a complete hip replacement. 

My Story: Text
bottom of page