In the hallways of Shriners Children’s™, you can usually hear Clara before you see her. When she’s not singing songs from her favorite musical The Greatest Showman, she’s making up her own tunes to put her feelings into words, something she’s done since the age of three.
“It’s easier to sing my feelings sometimes,” Clara admits, sharing that singing has always been a part of how she makes sense of both the happy moments and the hard ones that have come with years of treatment for infantile scoliosis. Through it all, however, Clara has maintained a sunny outlook and an indomitable spirit, one that has inspired her family to describe her as “bent, but never broken.”
“I’ve always heard that a child who sings is a happy child, and that couldn’t be truer for Clara,” says her mother, Kayla. “She always seems at peace.”
“Bent but never broken”
Clara’s journey with Shriners Children’s began long before she was able to put her feelings into song. When she was nine months old, Clara was referred from another hospital for a condition called torticollis, where the muscles in a person’s neck force the head to twist or tilt to one side. Clara was receiving treatment for torticollis when, at 15 months, a physician on her care team diagnosed her with infantile scoliosis as well, a rare condition that develops in children under the age of three and causes the spine to curve into an S- or C-shape. Whereas healthy spines have a curvature of less than ten degrees, Clara’s spine had a curvature of around 50 degrees.
Clara’s parents and her care team jumped into action immediately to figure out the best course of treatment. For Clara, this meant wearing a series of plaster casts, known as Mehta casts, which wrap around her torso and correct the curvature of her spine. The casts, which are worn full-time and replaced every few months, gradually guide her growing spine into a straighter position while allowing her to continue growing and developing.
Today, Clara has swapped out her Mehta casts 14 times, and has undergone more than a dozen surgical procedures to treat her scoliosis as well. But despite the hospital visits, the follow-up appointments, and the many cast changes, one thing that’s never wavered has been Clara’s infectious personality, her singing, and her “warrior spirit,” Kayla says.
Through the casting and the specialized care she’s received, Clara’s spinal curve has improved dramatically, from 50 degrees to an astounding 18 degrees. Clara currently wears a back brace during the day and comes into the hospital periodically—always singing—for x-rays of her spine, which allow her care team to monitor her progress and make sure she’s continuing to improve.
Spreading the joy and looking forward
Clara’s own treatment continues to progress, but she also knows that many other children in the hospital are still facing scary and uncertain days of their own. Clara, all too familiar with facing hard moments during treatment, is now determined to comfort other kids in her own unique way: raising money for teddy bears—equipped with back braces of their own—to hand out to the patients in the hospital.
Clara’s hope is to help make the hospital experience a little less tough for others, and so far, she’s off to a great start. Clara has managed to deliver more than 145 stuffed animals to other patients, and she isn’t planning on stopping anytime soon.
For now, Clara is busy encouraging other children and looking ahead to the adventures that await her as her treatment advances, including learning to do flips and cartwheels like her older sister and swimming in her grandmother’s pool without her back brace. For Clara, there’s always something to be joyful about, and always a reason to sing.
Learn more about Shriners Children’s and how you can support children like Clara here.
