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news News Wednesday, June 24, 2020 Wednesday, June 24, 2020 5:36 PM - Wednesday, June 24, 2020 5:36 PM

Patient with rare bone disorder travels to the Portland Shriners Hospital for care

Patient with rare bone disorder travels to the Portland Shriners Hospital for care

When Piper was 3 years old, her parents began to notice a limp when she walked. Concerned for their child’s health, Piper’s parents took her to various clinics and consulted with several physicians, none of whom could offer a solid diagnosis for what was causing their daughter to limp. Finally, after several discouraging consultations with physicians who were unable to provide answers, they received a diagnosis of a rare bone disorder called fibrous dysplasia.

Once they received the diagnosis, Piper’s parents began looking for a doctor with the skill and expertise who could provide the best care for her. Julie, Piper’s mother, was encouraged to learn more about Shriners Hospitals for Children — Portland, and they quickly made an appointment for a consultation. Piper was seen by pediatric orthopaedic physician Dennis Roy, M.D., and they were immediately put at ease by his confidence and knowledge on the topic of fibrous dysplasia, as he has treated several patients with the rare condition.

”Dr. Roy was extremely knowledgeable about her condition and set our worried hearts at ease,” said Julie. Piper continued to receive treatment from Dr. Roy for the next three years, even though her family eventually moved to Arizona.

According to Julie, Piper felt comfortable at the Portland Shriners Hospital and always spoke highly of the place that was so special to her. “I like it because it makes people get strong,” said Piper, age 6.

In February, Piper’s parents began to notice a new limp, and once again they scheduled an appointment at the Portland Shriners Hospital with Dr. Roy. However, two days before they were scheduled to fly to Oregon, they received a personal phone call from Dr. Roy, who explained how quickly everything was changing due to COVID-19. He recommended that, with travel restrictions in place, they get a second opinion from a hospital in Phoenix. The consulting physician in Arizona confirmed that Piper needed surgery for a hip fracture.

Suddenly, all elective surgeries were canceled everywhere due to the virus, and Piper had to wait for the care she needed even as her condition worsened. Her limp got to the point where she could no longer put any weight on her leg, and her parents grew concerned. Nonetheless, they were adamant about Piper receiving the absolute best care, and so they decided to wait until elective procedures resumed at the Portland Shriners Hospital.

In the midst of waiting, Piper transitioned from Dr. Roy to Jeremy Bauer, M.D., who personally reached out to Julie to discuss a tentative plan. Finally, elective surgeries resumed, and Julie was relieved to hear from the Portland Shriners Hospital staff member who helped schedule Piper’s surgery. Piper’s family made travel arrangements to Oregon, where she underwent surgery with Dr. Bauer, who installed a large metal plate at the head of her femur.   

“I’d wait longer and travel more to experience the level of care we have received. Dr. Bauer and Dr. Roy made decisions just prior to surgery that I can trust and appreciate,” Julie said. “Their level of expertise and motivation will have us singing the praises of Shriners Hospitals for Children — Portland for years to come.”

Piper on skateboardPiperPiper in wheelchair