While Katie Lyons was stretching at swim practice last fall, her coach, Eric Kemeny, noticed that something didn't look quite right.
Her rib cage -- and the way it protruded crookedly out of her back -- caught his eye.
It was a deformity he'd seen six years earlier in Sam Meighan, another swimmer on Bluffton's Fins swim team.
The coach called Katie's mom, Mary Beth Lyons, and asked if her 10-year-old daughter had been diagnosed with scoliosis. She had not.
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Lyons didn't know that signs of scoliosis could be seen in the ribs, but when Kemeny pointed out what he saw, she took Katie to the doctor the next day.
Katie's X-rays showed two curves in her spine -- a 26-degree curve at the top and a 20-degree curve at the bottom -- which made her a candidate for surgery. She was referred to an orthopedic surgeon, and serious treatment options had to be considered.
Beaufort County schools no longer perform the annual exam for scoliosis. And, as is the case for many kids, Katie's pediatrician had never checked her for the curvy spine disease. Because her swim coach had noticed her crooked spine when he did, though, Katie was able to avoid surgery for the time being.
Without intervention, the curves in her spine would have gotten worse.
"It was a matter of weeks that Katie could have gotten to a 30 degree (curve), and (if that had happened) Katie would have 100 percent had to have had surgery," Lyons said.
Lyons now wants to help educate other parents on the signs and symptoms of scoliosis, and how early diagnosis can prevent major surgeries and decrease bracing.
"Most of us parents who are now dealing with it had such little knowledge prior to our kids being diagnosed, and we need to be advocates," she said.
'SHE'S NOT GOING TO DIE'
Right after Katie was diagnosed, Lyons called someone who had been in her shoes: Renee Meighan, whose son, Sam, has scoliosis.
"She's not going to die," were the first words out of Meighan's mouth.
When Sam was 8, he was diagnosed with scoliosis during a physical exam before summer camp. His spine had a 36-degree curve. To stop the curve from getting worse while he grew, Sam traveled to Shriner's Hospital for Children in Philadelphia for experimental surgery designed by Randal Betz, a nationally recognized orthopedic surgeon specializing in scoliosis treatment. Staples were inserted into Sam's spine.
Since then, Sam, now 16 and entering 11th grade at Hilton Head Preparatory School, has been in and out of a back brace.
By a stroke of luck, Katie, a fifth-grader at St. Gregory the Great Catholic School, was taken on as a patient of Betz, who comes to Greenville twice a year to see patients.
When Janet Cerrone, Betz's assistant, pulled up Katie's X-ray, she looked at Lyons and said, "You better go and thank that coach profusely."
As with almost all medical conditions, the earlier the diagnosis, the better the prognosis.
"Early screening means more good treatment options are available to stop and reverse scoliosis," Cerrone said. "That will mean fewer spinal fusion surgeries needed."
Because of the relatively low prevalence of scoliosis requiring active treatment -- curves over 30 degrees are found in less than 0.2 percent of the population -- early screening is often overlooked.
Katie's new pediatrician, Lance Lowe of Palmetto Pediatrics, stresses the importance and ease of early scoliosis screening.
"Personally, I do scoliosis checks as soon as a patient can stand up and touch their toes," Lowe said.
It used to be a test performed regularly in schools, but privacy concerns of parents, cost and time of having a school nurse screen students, and the low prevalence of diagnosis have all contributed to fewer and fewer school screenings.
The Lyons and Meighans are working to get scoliosis checks reinstituted at St. Gregory the Great and Hilton Head Prep.
Lowe said it can also be missed when parents take their children to convenience clinics at drug stores for mandatory physical exams.
But scoliosis can be spotted at home with a simple test. Parents can check for unevenness in a child's back and ribs when they bend over, Lowe said. Often, parents are the first to notice scoliosis in their child.
"It literally takes three seconds. Stand up straight, touch your toes. That's all it takes," Lowe said. "You can see changes over time if you do it that way."
ACCEPTING A BRACE
Sam sought an experimental surgery rather than the more traditional treatment of having rods attached to his spine. The rods would have fixed his spine, preventing any movement, which would interfere with his competitive swimming.
At age 9 he had the stapling surgery, but that didn't eliminate the need for a brace -- which was a different sort of nightmare for the self-conscious preteen.
"I was afraid to show it to people," Sam said. "I thought people would look at me different, like there was something wrong with me."
It also wasn't very comfortable. The curve in his spine was severe, so his brace had to be more intense.
"My night brace wraps my whole upper chest area. It's tight. I can't even move around. I can't sit down with it on or bend over," Sam said.
He still has trouble falling asleep at night with it on and will sometimes take it off in his sleep.
"I get really disappointed in myself and feel guilty. I can't even remember taking it off," Sam said.
Although he was embarrassed at first, his attitude about the brace has changed as he has grown up.
"Now, I want to be out there and tell people about scoliosis, how there are ways to help it, and to try and get scoliosis checks back in school," Sam said. "Seeing Katie and (knowing) what I've gone through, I feel like I can help her a lot.
"I told Katie it'll be all right, that the brace is only helping her, and to keep swimming."
At Shriner's Hospital for Children in Greenville, Katie browsed the online catalogue of braces, choosing the style she wanted.
There were braces in pink, snakeskin, camouflage and zebra print. She narrowed her choices down to blue swirl -- the same as Sam's brace -- and tie-dyed swirl, which she eventually chose.
Before October, Katie had never heard of scoliosis. After her diagnosis, the word still tripped her up. She first told her classmates she had "stegosaurus."
But scoliosis has became a common word in her class.
The brace she now wears nearly 23 hours a day took some getting used to, but Katie has adapted better than most. She likes to brag about her "abs of steel." She dares her peers to punch her in the stomach, and they're startled when their fists meet hard plastic.
Katie has two brace buddies at school who help her put her brace back on after she's used the bathroom. She said her friends have asked to try it on.
She carries around a "butt pillow," a pink rose-shaped cushion given to her by a friend on the swim team after she was diagnosed. Sitting on it helps relieve the discomfort of her brace.
While staying the night at a friend's house, Katie made a video dancing in her brace to the song, "Wop," by J. Dash. When Katie's doctor in Greenville asked how she was doing emotionally with the brace, Lyons showed the video, which was then shared around the office and eventually on social media.
Katie has been so compliant with wearing her brace, that she's avoiding surgery for now. However, she still has the majority of her growing to do, so her curve will likely get worse and eventually require surgery.
In the meantime, Katie has joined Sam in the effort to raise awareness for scoliosis. There is a light at the end of their tunnel, and treatment will steadily lessen until there is none.
Katie gave a presentation to her class on scoliosis, showing off her brace. A classmate's parents -- Bluffton chiropractors Holly and Sean Matteo -- have volunteered to screen students at St. Gregory the Great, and are working with the school to make it a reality.
In February, Katie spoke at a Shriner's fundraising event in Greenville.
"I just say that attitude is everything," Katie said.
Follow reporter Laura Oberle at twitter.com/IPBG_Laura