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news News Tuesday, March 26, 2019 Tuesday, March 26, 2019 11:01 AM - Tuesday, March 26, 2019 11:01 AM

Meet Theo

Born with one of the rarest congenital lower-limb deformities

Meet Theo

Three days shy of his first birthday, Theo underwent an above-the-knee amputation on both legs. The surgery was performed at Shriners Hospitals for Children — Erie. Theo was born with bilateral tibial hemimelia, type 5B, which means he was born without tibia bones (the larger weight bearing bone in the lower leg).

The tibia is located in the lower front portion of the leg and is the second largest bone in the body. It makes up both the knee joint and the ankle joint, and is most commonly referred to as the “shinbone.”

Tibial hemimelia is one of the rarest congenital lower-limb deformities, and the chances of a child being born with this condition is estimated to be one in one million live births. Of those children, bilateral tibial hemimelia (meaning both legs involved) has only been reported in roughly 30 percent. 

Today, Theo is a 16-year-old who has defied all odds. Theo’s family moved in 2006 and transferred his care to Janet Walker, M.D., pediatric orthopaedic surgeon, and Chris Burke, prosthetist, at Shriners Hospitals for Children Medical Center — Lexington. Over the course of Theo’s care at the Lexington Shriners Medical Center, he has received nine sets of prosthetic legs, running blades and other important prosthetic components.

“While Theo has only required his one amputation surgery, keeping up with his growth and activity needs have been a challenge,” said Dr. Walker. “This is where our multi-disciplinary prosthetic team works best. While I write the prescription for Theo’s prostheses, I need ongoing input from our prosthetists, physical/occupational therapists and nurses to make sure each of our patients get the best equipment for their individual needs. All of these professionals are on-site during our prosthetics clinic, facilitating our team collaboration.”

Theo began to swing his regular prosthetic legs so that he would feel a sensation like running. He taught himself to snap upright from a bent waist to jump off the ground. While Theo realized that he was not technically running or jumping, he wanted to be able to do these things. He talked to Chris Burke about achieving his dream of joining the seventh grade junior high track team. Chris went to work on building running blades for Theo that were custom fabricated to his body, needs and purpose. Running blades are large C-curve prosthetic feet that are extremely responsive prosthetic lower-limb devices. They allow individuals to run short or long distances with added functionality. His first pair was custom designed for Theo at the end of his sixth-grade year. When Theo put his running blades on for the first time, he was running and jumping within five minutes.

Theo started to wear the running blades whenever a good opportunity presented itself. He wore the blades to summer camp, junior high physical education classes, junior high track and during a 5K race. His sprint times were fast compared to national standards. In 2018, Theo’s parents took him to several adaptive track and field events, where he was able to see first-hand how successful and strong he was compared to other athletes with a similar disability. Theo qualified for the Junior National Adaptive Track and Field Championships, and went on to achieve first place, setting a record in his disability and age category for all events in which he participated.

“Not only does Chris know how to make Theo’s legs fit perfectly to his body, he has shown an ability to work with Theo at all stages of his development,” said Suzanne, Theo’s mom. “He taught me and Theo’s dad how to use and fix Theo's first set of legs with knees that bend. He helped make Theo's legs comfortable for a full day of sitting in a desk when he started elementary school. Chris helped Theo run and jump in middle school. And, Chris continues to teach Theo, now that he is a teenager, how to properly care for the legs, which is especially helpful because teenagers would prefer to listen to someone who is not their parent!”

Theo is scheduled to compete in May 2019 in the Desert Challenge Games held in Arizona, which features international competitors. “Theo’s dad and I would not be surprised if he was selected to represent Team USA Track and Field in the 2020 Paralympics, although Theo is too humble to acknowledge that as a realistic possibility,” said Suzanne.

Theo knows he cannot grow legs, and he believes he might as well just move forward with what he can do instead of being frustrated by what he cannot do. Many things come easy to Theo, but when asked about something that is difficult, he mentioned walking. “Walking, particularly in tight spaces, is not easy,” said Theo, but he enjoys the challenge of finding ways to overcome the difficulty.

Theo and his parents drive four hours one-way to receive pediatric orthopaedic specialty care at the Lexington Shriners Medical Center. “We appreciate the extra effort that everyone makes to ensure that Theo is as successful as he can be with everything that he tries. While everyone at Shriners Medical Center is considered an expert in their field, they are always willing to work with the patients and listen to the parents who are experts in their child,” Suzanne said. “The goal of everyone at Shriners Medical Center is to help patients reach their goals, period. In all of our years of receiving care from Shriners Hospitals, we have gladly driven the four hours one-way to have Theo’s legs fixed.”

Theo is headed to college in 2020, and whether he pursues his elementary school dream of being one of the first legless astronauts on Mars, or something else, remains to be seen. “I wouldn’t be surprised in the least bit if he earned a Ph.D.,” said Suzanne. For now, his big focus as he enters his senior year in high school is to become a drum major in the school band. With help from Dr. Walker and Chris, Theo has no doubt that he will finally be able to play while marching in a parade.

Theo standing, smiling