She is a “beary special” scoliosis patient

By Maureen Gilmer, Riley Children’s Health senior writer, mgilmer1@iuhealth.org

When Caroline Langel learned she had scoliosis as a middle-schooler, she wanted to do something to help other kids like her.

Recently, she got her chance, raising thousands of dollars to purchase hundreds of stuffed bears for patients at Riley Hospital for Children.

These aren’t just any bears. They are called Higgy Bears, and they come with miniature back braces, in various colors and patterns, just like the ones kids with scoliosis often wear.

After her pediatrician expressed concern about what looked like a curve in her spine when Caroline was 11, an X-ray confirmed the rotation, which likely would worsen over time without treatment.

That’s when Caroline and her mom, Nicole, began making regular trips from their home in Fort Wayne to Riley Hospital in Indianapolis to see orthopedic surgeon Dr. Aki S. Puryear. Riley has a robust program dedicated to the treatment of scoliosis, a condition that can range from mild to moderate to severe. Learn more here.

With a curve now in the 24-degree range, Caroline’s case falls in the moderate category. A curve greater than 45 to 50 degrees requires spinal surgery.

Scoliosis, which can appear in infancy or in early adolescence, is more common and can progress faster in teenage girls. Studies show it is not caused by backpacks or posture, but a genetic link exists in some cases.

Caroline, now 13, has been fitted with multiple braces over the past year and a half – one she wears most of the day and another she wears at night. She also participates in specialized physical therapy. The hope is that the curvature in her spine will freeze until she finishes growing.

“My spine is curvy and rotating, but if you get a brace, then it holds it in place while you grow,” she explained.

It was a little hard to get used to wearing the brace early on, Caroline said, but now it’s not a big deal. “If I’m wearing a sweatshirt, you can hardly tell.”

She doesn’t let it hold her back from after-school activities either, as she participates in cross-country, basketball, soccer, track and the school musical.

That’s one of the reasons she wanted to support other kids dealing with a scoliosis diagnosis. She learned about Higgy Bears, a nonprofit started by a woman in Michigan who was diagnosed with scoliosis as a child, and created her own web page, asking family and friends to help her raise money for the fuzzy bears.

The result was more than 700 bears purchased and delivered to her family’s home, nearly crowding out the humans.

Caroline and her younger brother unpacked each bear at one point and lined them up on the stairs at home.

“That’s a lot of bears,” laughed her mom.

Now though, after delivering the stuffed support animals to Riley and two other places, Caroline has about five she keeps at home.

“It felt really good to do that,” she said. “It was really cool.”