'Governor Gav' Shares His Shriners Children's Journey Across Midwest

Fourteen-year-old Gavin is accustomed to having an audience. Since he was 6 months old, his major milestones have been charted, logged, celebrated, and often witnessed by a specialized care team at Shriners Children’s.

There was a time when Gavin’s family wasn’t sure he’d reach his 7-month birthday, let alone crawl or walk.

In 2009, Gavin became critically ill with meningococcal meningitis. In severe cases, the bacterial infection causes a rash and lesions that can lead to amputations. Living in rural South Dakota, Gavin was first transferred to a hospital in Kansas, where his mom, Echo, said she began to understand the seriousness of the infection.

“He was in a coma, and the doctors said he had about a 5% chance of survival,” Echo recalled. “They also wanted to start amputations.”

But Echo asked if there were any hospitals that specialized in treating conditions like Gavin’s. There was: Shriners Children’s Ohio.

Gavin spent the next 54 days at Shriners Children’s. He endured 12 surgeries, including a tracheotomy, skin grafts, and muscle flaps to preserve as much healthy tissue as possible. He was also kept on infection control precautions, which meant everyone, including his mom, had to wear medical gowns, gloves and masks.

“It was so hard not having skin-to-skin contact with my baby,” Echo explained. “I wanted to comfort him, but there was always the protective barrier.”

Still, Echo said the hospital staff found creative ways for her to stay close to Gavin while maintaining infection prevention protocols.

“Instead of a crib, he was in a regular bed so I could lie with him and read stories,” she remembered.

The clinical team not only closely monitored his recovery progress, but also his developmental milestones. And there were many. During his nearly two-month stay in the hospital, Gavin first rolled over, sat up unassisted, ate semi-solid foods, and started babbling.

After he was discharged, Gavin and his mom traveled from South Dakota to Ohio nearly 60 times so the clinical team could monitor his skin grafts, flexibility and strength. He also became a joint patient at Shriners Children’s Twin Cities to keep an eye on an issue with the growth plate in his right knee and ankle. It remained unchanged, so when he was 10, Gavin decided the next step forward in his recovery would be amputation.

Gavin admits that people stare at his prosthetic leg and the scarring over most of his body, but he’s used to being in the spotlight.

“I was a lead in my school play for three years in a row,” he said. “I stood in front of a lot of people with the governor of South Dakota to light the capital Christmas tree. I’ve spoken in front of hundreds of Shriners in South Dakota, North Dakota and Ohio about my story and how Shriners Children’s saved my life.”

He also loves playing sports, including basketball and golf.

In fact, Gavin is so comfortable with meeting new people and trying new experiences, he has earned the nickname “Governor Gav.”

But his favorite title is the one he earned when he was just 6 months old.

“I’m a Shriner kid,” he declared. “From day one, Shriners have felt like family to me. There is a life-long bond to the hospital and all the Shriners and their ladies who give kids like me hope for an optimistic future.”

Gavin was chosen as one of the Patient Ambassadors throughout the country to represent the healthcare system at the Shriners Children's Open, where he will serve as a Standard Bearer throughout the weekend, carrying the scores of professional golfers as they compete in the tournament. It is a rare “inside the ropes” opportunity at a PGA TOUR event, as well as the chance to share how Shriners Children’s has helped transform his life. We cannot wait to see him out on the greens alongside other patients representing the Shriners Children's mission.