Meet riley

9.21.21

Diagnosis: Perthes Disease

Last Update: 11/15/21

Meet Riley - a rambunctious 10-year-old who loves playing soccer. Last year, she began to limp and have debilitating pain. After a trip to Phoenix Children's Hospital ER and a visit with an Orthopedic Surgeon, Riley was diagnosed with Perthes Disease - a rare childhood disease where the blood flow to the femoral head stops for no reason and the bones start to die.

 

In January, Riley underwent a Core Decompression with bone marrow aspiration. This procedure only came with a 30% chance of success rate. After the Core Decompression procedure, Riley dealt with a roller coaster of good days, bad days, and unbearable pain. She connected with a specialist in Baltimore who reviewed Riley's records and recommended a Hip Distraction with an External Flexor plus three weeks of extensive physical therapy. The External Flexor will remain on for four months, then Riley will need to return to Baltimore to have another surgery to remove it.

 

In April 2021, Riley traveled to Baltimore to have the Hip Distraction with an External Flexor procedure. During her stay in Baltimore, the foundation partnered with several organizations to construct a main floor bedroom in her two-story home, allowing Riley to avoid stair climbing to her second-floor bedroom.  A trip back to Baltimore in August 2021 resulted in the External Flexor removal and Riley beginning more physical therapy to regain strength. During this time, she still used a wheelchair, crutches, and leg braces as her body healed and got stronger.

 

Through all this, Riley suffered from debilitating pain and continued physical therapy to strengthen her hips and legs as her doctors monitored her disease. We are happy to report that as of October 2021, Riley can walk with a slight limp but no longer needs a wheelchair or crutches! She will continue physical therapy and monitoring by her doctors but, at this time, she is in a wait-and-see approach to see how her growth rate impacts her disease.

Click here to learn more about Perthes Disease