Advocating for kids at CHoR as the 2025 Children's Miracle Network Hospitals Champion

For many 7-year-olds, being allowed to play video games all day would be a dream come true. Last fall, that dream became a reality for second grader Jonah Smith when he was invited to represent CHoR during the annual Extra Life gaming marathon. As the 2025 Children's Miracle Network Hospitals Champion, Jonah will advocate for kids at CHoR, the local CMN Hospital, by participating in various events including Extra Life and the 36 Hours for Kids radiothon throughout the year.

While Jonah is excited about having his picture taken and going to different events, his mom, Rebekah, said having Jonah serve as the CMN Hospitals Champion allows her to share his story and her family’s experiences to raise awareness about the hospital.

Overcoming obstacles beginning from birth

Jonah was born with broken femurs, dislocated hips and deformed feet, a surprise to Rebekah and her husband, Jonathan. When Jonah was two months old, the couple met with the genetics team at CHoR, and before his first birthday, Jonah began seeing CHoR specialists from neurology and orthopaedics. Over the next few years, Jonah had two orthopaedic surgeries at CHoR and began regular physical and occupational therapy at our Petersburg Therapy Center.

Shortly after his third birthday, Jonah was diagnosed with spinal muscular atrophy with lower extremity predominance 1, a rare form of SMA that causes weakness in the lower extremities by affecting muscles and motor skills. Since his diagnosis, he’s had additional surgeries on his feet and hips and is continuing to build skills and strength with PT and OT. He also visits the muscular dystrophy clinic every six months where he’s able to meet with all his specialists at once.

“Jonah doesn’t let his disability stop him,” said Rebekah. “He overcomes every obstacle that he faces.”

Described as “a ball of energy,” Jonah enjoys playing basketball, swimming and rock climbing with Sportable, a local adaptive sports organization. He also enjoys art and “snack time” at school, spending time with his two brothers and playing video games, especially Mario games.

“When Jonah was born, we were not sure if he would ever be able to walk independently,” Rebekah recalled. “Now he can walk independently and can take steps without his brace. We’re really excited about all the progress.”

Care that’s “above and beyond” at CHoR

SMA-LED is so rare that its prevalence is unknown. Fortunately for Jonah, he has a top-notch team at CHoR.

“I feel like his doctors are very well versed, especially in a disability that is extremely rare,” Rebekah said. “They let me know what their knowledge is and what I need to know to help him improve.”

Rebekah often describes the care Jonah receives as “above and beyond.” Jonah’s team helps set up therapies, works with external partners to get orthotics for his shoes and coordinates with his Chesterfield County school to ensure he receives the support he needs. They also know how to motivate Jonah like the time his physical therapist used visiting the game room as a way to motivate him after surgery.

When Jonah had his most recent surgery, he and Rebekah stayed in the Children’s Tower, an experience Rebekah said was wonderful for everyone. Jonah loved the game rooms and other child-friendly activities while Rebekah appreciated the team support and comfortable environment.

“Jonah was taken care of so well that he didn’t really focus on his pain,” said Rebekah, who recently switched all of Jonah’s care to CHoR.

“When we go into an appointment, we don’t have to explain Jonah’s situation,” she said. “They already know. They know what the next steps are, and they know Jonah.”

Rebekah is looking forward to supporting Jonah as the CMN Hospitals Champion and letting others know about the incredible services at CHoR.

“When I first had Jonah, I didn’t know what direction I needed to go,” Rebekah said. “There is a whole team here that will hold your hand through the entire process.”

Jonah agrees. “I want every kid in the world to know about my doctors and my hospital. I think the children’s hospital is good because they do good things for kids and fun things.”

We first introduced you to Jonah in May 2023.

Learn about all the fun ways Jonah and others support CHoR throughout the year.