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Leading by Example

National Patient Ambassadors share their stories to give hope to others

Sydney and Seth both received an innovative treatment for scoliosis at Shriners Hospitals.

Every year, Shriners Hospitals for Children selects two National Patient Ambassadors to represent the health care system’s patients. The ambassadors spend the year sharing their stories of perseverance in the face of adversity and the ways Shriners Hospitals for Children has made a dramatic difference in their lives.

This year, new National Patient Ambassadors Seth and Sydney will be joined by Connor and Mia, who are continuing their National Patient Ambassador journey after a year interrupted by the coronavirus pandemic. We are honored and grateful to have these four impressive young people advocating for our health care system.

Meet Seth

Seth was 11 when his doctor noticed a curvature in his spine. They began with a “wait and see” approach and, later, treatment from a chiropractor. Still, the curvature quickly progressed to a severe degree. He and his family learned about Shriners Hospitals for Children from a social media group focused on the vertebral body tethering (VBT) treatment for scoliosis — an innovative procedure developed at Shriners Hospitals for Children. 

Seth, from Fort Wayne, Indiana, underwent VBT surgery at Shriners Hospitals for Children — Philadelphia when he was 13. The surgery, performed by Joshua Pahys, M.D., helped the young athlete quickly return to the playing field. “My pain has been reduced dramatically, my curvature is half what it used to be, and my flexibility is on par with my peers,” Seth said. 

Seth, now 17, enjoys playing many sports, including football, baseball and basketball, and is now focusing on competitive golf. “VBT has given me the opportunity to perform my best in athletics without the limitations of scoliosis,” Seth said. “The extra inch I gained on the operating table didn’t hurt on the basketball court, either.” 

Seth is pleased and proud to have the opportunity to be a National Patient Ambassador for Shriners Hospitals for Children. “I was impressed by the amazing treatment that I received at Shriners Hospitals, and I would be honored to guide someone to their care,” Seth said. “It will mean a lot to me to give back to the Shriners Hospitals community because of the gift that they gave me.”

Meet Sydney

Sydney, who is from Oklahoma City, Oklahoma, learned she had scoliosis when she was 10. Her treatment began with bracing, but despite a strict exercise regimen and wearing her brace 23 hours a day for 1½ years, her curvature progressed. Searching for an alternative to spinal fusion surgery, Sydney and her family learned about the VBT treatment option. 

When she was 12, Sydney had the VBT procedure at Shriners Hospitals for
Children — Philadelphia, performed by Steven W. Hwang, M.D. “VBT has allowed Sydney to retain her flexibility and to get back to all the things she loves faster and stronger than ever,” said her mom, Melissa. 

Now 16, Sydney loves playing the oboe in the school band and enjoys painting and swimming. Her great-grandfather was a Shriner, and she looks forward to continuing that family legacy by telling her story as a National Patient Ambassador. 

“To make my scoliosis journey a more positive experience, I had to reach out and help others,” Sydney said. “I said ‘yes’ to being a National Patient Ambassador because Shriners Hospitals has done so much for me, and I feel I could never repay that. That surgery has changed my life. It has shaped me to be the person I am today.”

To watch Seth and Sydney’s video, Reaching New Heights, visit YouTube.com/ShrinersHospitals.

Connor and Mia

Due to the pandemic, Connor and Mia missed out on the typical opportunities they would have had as National Patient Ambassadors last year. We’re pleased that they’re staying on, joining Seth and Sydney in spreading the word about Shriners Hospitals for Children.

Connor, 15, was born with a bilateral incomplete cleft lip and complete cleft palate involving the hard and soft palate. By the time he was 3 weeks old, he was failing to gain weight and was about to be admitted to a hospital. That’s when Connor’s family learned about Shriners Hospitals for Children — Chicago. Through numerous surgeries and interventions, Connor is an example of the healing powers of Shriners Hospitals, as well as the perseverance of our patients. Throughout years of treatments, he has used his passion for golf to inspire kids and raise money for Shriners Hospitals.

Mia, 17, was born with a severe case of infantile idiopathic scoliosis. Her journey with Shriners Hospitals for Children began at age 2, when she was first seen at the St. Louis location. Mia’s treatments have included halo traction to gradually straighten and stretch her spine, as well as nearly 20 surgeries. Her journey has inspired her gift for singing and performing, which she has graciously shared with the Shriners community.

Innovation at Shriners Hospitals

Seth, Sydney and their families trusted Shriners Hospitals enough to seek out our innovative care and expertise. Medical staff at the Philadelphia Shriners Hospital, led by Amer Samdani, M.D., chief of surgery, developed the methods and techniques underlying vertebral body tethering and worked with the FDA and industry partners to bring the technology to approval. Today, the procedure is offered at not only the Philadelphia Shriners Hospital, but also at other Shriners Hospitals locations, including Portland, Oregon, and Sacramento, California.

Shriners Hospitals for Children is proud that our research and innovation help improve patients’ lives. We are grateful to National Patient Ambassadors Seth, Sydney, Connor and Mia for sharing their positive experience with others.