In 2015, Sarah Begun’s pediatrician asked her to bend down and touch her toes, and there it was: a curve in her spine. That day marked the beginning of a journey that issued in a slew of x-rays, constant spinal monitoring and eventually 18-hours a day of bracing.
In 2019, Begun is embracing what makes her different. On April 13, Begun showcased her brace in the “Embracing the Curve: Curvy Girls Scoliosis Fashion Show” at the King of Prussia Mall. The fashion show marks the latest in a litany of efforts that Begun and her mother, Caren, have undertaken to spread the word about scoliosis.
Begun was 7 when she was diagnosed with scoliosis. At the time, she had an 18-degree curve that the doctors did not yet find worrisome enough to brace, but every four to six months, Begun was scanned to ensure that the curve wasn’t increasing.
In 2015, a scan revealed that her curve went from 18 degrees to 26 degrees, and her doctors advised her that she was a candidate for bracing. So, they visited the orthotist and learned that every brace has to be custom-made to fit the patient’s body. Caren said at that point, they felt a little lost. They weren’t certain what bracing entailed, and so Sarah’s orthotist recommended they check out a Curvy Girls Scoliosis Foundation meeting.
So, while Begun’s brace was being made, mother and daughter checked out last year’s Curvy Girls Scoliosis Fashion Show. Begun was apprehensive about the experience, but when they arrived, a girl who was Begun’s same age with similar hobbies strutted her stuff down the runway. Caren prodded Begun into meeting the girl after the show. They’ve been friends ever since.
Begun said at a time when she felt alone, connecting with the Curvy Girls group gave her a support network of girls who were facing the same challenges.
“I know I’m not the only one going through it,” Begun said. “I might be the only one in this area, but I know it’s not just me.”
After Begun received her brace, she took a night to adjust to it, but the next day, Begun and her mother were off to tackle Begun’s new wardrobe problem head-on. They quickly learned that to accommodate the brace, they’d have to go up a few sizes in her clothing, but when dressed in the right size clothing, the brace proved largely inconspicuous except for an area sticking out in the back.
While Begun was initially uncomfortable when her fellow classmates asked her what was sticking out of her back, Begun has since become eager to speak with her classmates about her brace and condition.
Currently a fifth-grader at Richard Stockton Elementary, scoliosis was the subject her fourth-grade science project in an effort to help educate her classmates. She and her mother have both shared the book “Braced” by Alyson Gerber (a novel about a young girl with a brace) with friends and purchased a copy for the school’s library to help spread awareness.
Their current project, however, has been starting a mother-daughter blog called “Straight Up Scoliosis” about the ups and downs of life with scoliosis.
“We wanted to have a way to communicate with others and share our stories about it,” Begun said.
Caren said growing up is difficult enough as is, let alone with the challenges that come with scoliosis. She said while scoliosis is not life-threatening, the condition could require surgery if her daughter’s curve continues to get worse. While the brace does not correct the curve, it can prevent it from getting worse. Their blog details the questions they’ve asked, the help they’ve sought and their journey along the way.
“We wanted to use this as an opportunity – not to say, ‘woe is me’ – but to show others there are resources out there,” Caren said.
Their biggest support network has come from the Curvy Girls Foundation. The group’s Philadelphia chapter has monthly meetings during which Begun gets to interact with teenagers with the same condition, and Caren can chat with parents and exchange information or simply offer support.
The Curvy Girls’ yearly fashion show is meant to demonstrate that the brace doesn’t have to hold you back, and that despite the device, the girls can still be fashionable and stylish. For Begun, when the time came for her turn, she felt completely confident walking down the runway.
While her doctors aren’t quite sure how long Begun will have to wear the brace given that she’s still growing, Begun said she doesn’t mind being in the brace for a few years if it means avoiding surgery.
In the meantime, the brace isn’t holding her back from swimming, dancing or any of the other activities that she loves, and she’s happy to chat with anyone who may have questions about her condition or her brace. Recently, Caren learned that a coworker’s goddaughter around Begun’s age had been diagnosed with scoliosis. Begun said to give the girl her number.
To learn more about the Curvy Girls Scoliosis Foundation, visit https://www.curvygirlsscoliosis.com. To read the Beguns’ blog, visit http://straightupscoliosis.com.
