Shriners step up to help Wythe child
Cordelia Johnson, her mother Beth, and father Tyler at the Wytheville Moose Lodge for the Oct. 3 Kazim Shriners benefit.
When Cordelia “Cora” Johnson of Max Meadows was born a year and a half ago as the seventh child of Tyler and Beth Johnson, her parents learned that she had a rare condition called fibular hemimelia, which causes a child to be born without all or part of the fibula, one of the two main bones in the lower leg.
In Cora’s case, she was born without almost the entire fibula in her left leg, with only a tiny portion of the bone present. The condition meant that the length and structure of her leg and foot would be permanently affected.
“From the very beginning, we were faced with some very difficult decisions in terms of her future,” Beth Johnson, her mother, said during a speech at the Wytheville Moose Lodge on Oct. 3 at a benefit supporting the local Kazim Shriners.
The Shriners, she said, helped the family navigate those difficult decisions and ultimately determine the best course of treatment for their daughter.
“The Shriners walked with us through every one of those difficult decisions and ultimately helped us decide that the best alternative for Cora was to amputate her foot,” Beth explained. “We have seven children, so when something in our family goes wrong with one of our children, we were not only concerned with her quality of life, but also how we were going to pay for everything that was needed.”
The family initially sought treatment in Roanoke, where Beth said doctors had only encountered Cora’s condition twice. After approximately four weeks of treatment, the family was ultimately sent home without the long-term care they felt Cora needed.
One of the greatest concerns was the cost of prosthetic care.
“Our insurance was only going to cover one prosthetic for her entire life,” Beth explained. “From birth to adulthood, each child needs approximately one to two prosthetics annually throughout their life.”
The Johnson family was eventually introduced to professionals familiar with fibular hemimelia and who had experience treating patients through Shriners. That led Beth and her husband, Tyler, to pursue a referral to Shriners.
The family was amazed to learn that Cora’s treatment and care would be provided at no cost and that she would be treated by medical professionals experienced in her rare condition.
Shriners Children’s Hospital in Greenville, South Carolina, began treating Cora when she was just 2 months old.
Her first major surgery took place near her first birthday. She later underwent an additional procedure to remove a pin from her leg. Her cast was removed in Greenville, where she also received physical therapy. Her prosthetic was made in-house at the hospital.
“Shriners was there through her surgery, prosthesis and recovery time,” Beth said.
During the benefit, Cora’s oldest brother, 16-year-old Landon, proudly held up his baby sister’s prosthesis for the crowd to see.
For Beth, the experience has demonstrated that the mission of Shriners extends far beyond medical procedures.
“The Shriners are absolutely devoted to ensuring that every child they treat receives the absolute best care possible for their conditions,” she said. “They never want any child treated as though they have a problem or that there is something different or wrong with them. They want to ensure that they are as happy and comfortable as possible and reaching the maximum potential of each one of their lives.”
Beth said that same compassion extends to the parents who are navigating every step of their child’s unique medical journey.
“Every parent is treated with the utmost loving care,” she noted. “You never feel like you’re in a hospital, and our other children are upset when they can’t come with us to Cora’s appointments.”
Beth encouraged the hundreds of people attending the Moose Lodge benefit to continue supporting the Shriners and their work with children and families.
“You are changing lives in tremendous ways,” Beth Johnson told the crowd. “We couldn’t be more grateful to each and every one of you.”
