When Riley was born, she was diagnosed with a rare bone dysplasia that made her bones irregular in size and shape. As she grew, the dysplasia began to manifest itself in her spine, and she was diagnosed with congenital kyphoscoliosis at just one year old.
For the next five years, Riley saw a specialist in Massachusetts and had to wear a brace for over 18 hours a day for six years. When Riley’s family moved to Pennsylvania for a new opportunity, they were referred to the amazing team at Nemours Children’s Hospital, Delaware. There, they met with Dr. William Mackenzie, who continued to provide Riley with the best care possible.
As time went on, she had to undergo several casts, and implantation of magnetically controlled growing rods. This surgery, a complex procedure performed by both Dr Mackenzie and Dr. Suken Shah, pediatric orthopedic spinal surgeon, was successful to maintain the correction of her curvature and still allow her spine to grow. With routine lengthenings, she was able to resume the normal life of a child. The rods eventually completed their course and had to be revised 4 years later, but Riley never slowed down , she always lived life to the fullest despite her challenges.
At age 14, Riley was planning for conversion to a more permanent spinal procedure that could hold her spine in its corrected position with a final fusion. Dr. Shah removed the prior instrumentation, implanted larger screws and rods and performed a spinal fusion surgery to help correct her spine for what we hope could serve as her final procedure. Despite all of the challenges she faced, Riley’s positivity and strength never wavered.
Now, Riley is a sophomore in high school, and she’s thriving. When she’s not busy playing lacrosse, studying, or hanging with her friends, she works at “Goodness Bowls,” a local health food store. She enjoys working out and strengthening her core through physical therapy.
Throughout all of her challenges, Riley has remained incredibly positive and determined. She’s a true inspiration to us all, and we can’t wait to see all the amazing things she accomplishes in the future.
“I recently reviewed all of her X-rays and course of treatment over the years and continue to be amazed at her resilience and inspired by the trust her parents placed in our team at Nemours,” says Dr. Shah. “Her outcome is a testament to what can be achieved in the care of a child with a complex problem by a dedicated team, application of responsible, evidence-based innovation and technology and family-centered care.”
