SAND HILL – Like so many other tweens and teens aspiring to be like Katniss Everdeen from “The Hunger Games” series, Ainsley Gray took up archery after receiving a bow and arrow for Christmas in 2013.

Diagnosed with scoliosis three years earlier, Ainsley’s spine had continued to twist itself into a marked “S” shape, but she nevertheless got to be a pretty good shot. She’s even better now, though, after being only the third person on the planet to undergo a groundbreaking surgery last November that straightened her spine using both traditional fusion and a method of vertebral tethering.

The 13-year-old from Sand Hill grew 2 inches on the operating table on Nov. 17, 2014. She now stands nearly eye to eye with her mother, Kara. She can run for longer periods in gym class, and she feels more confident.

“Before I was so curved over,” Ainsley said. “This is going to sound weird, but I feel like I’m almost powerful because of how tall I got. … I can stand up straight now instead of slouching all the time.”

While last Thanksgiving she was laid up and unable to eat much a week out from her surgery, this year she is looking forward to celebrating the holiday at her uncle’s new house near Pittsburgh. What is she most grateful for? Her mother’s determination.

“Because I would probably still be in pain now. I would be way worse or have had (fusion) surgery. It’s just amazing that she found all this out.”

Curvy Road Ahead

Kara Gray rejoices that her daughter is now able to live with no physical limitations or pain. Doctor appointments are no longer stressful since she got the all-clear in May.

“Now we don’t have to worry about it anymore. It was always just kind of hanging out there over our heads,” Kara said.

She explained it was not exactly a straight shot from diagnosis to end result. But despite the difficulty navigating the twists and turns, she feels Ainsley got the best possible outcome.

When Ainsley was first diagnosed at age 8 in 2010, her spinal curve was 17 degrees. A specialist in Pittsburgh said it was a watch-and-wait scenario. The standard treatment is a back brace once the spine reaches a 28-degree curve. Ainsley hit beyond that mark just before turning 10, when an X-ray revealed her thoracic curve had doubled to 34 degrees, now with a compensatory curve below it (forming an “S”).

Although she wore the brace 23 hours a day, it didn’t limit her activities.

“In fact, they encouraged her to be as active as she could possibly be,” Kara said, in order to keep her core muscles from deteriorating. The Grays live on a farm, and Ainsley still rode her horse, did farm chores and household chores. The biggest limitation was not being able to bend over easily.

Despite a year of wearing the brace, Ainsley’s thoracic curve continued to form. In March 2013, it was at 45 degrees.

Kara, who had been researching scoliosis causes and treatments for two years, knew the next step was spinal fusion surgery using steel rods.

“We wanted to do everything we could to avoid putting rods in this child’s back,” she said, referring to herself and her husband, John, a carpenter with Local 3. Spinal fusion surgery, she knew, could mean long-term complications, long-term back pain and additional surgeries. It would limit Ainsley’s mobility. And it was permanent.

In her search for alternatives to the surgery, she discovered a scoliosis “boot camp” at the Lancaster Spinal Health Center in Lancaster, Pa., which offered an intensive combination of physical therapy and chiropractic care over a two-week period.

The Pittsburgh specialist told her it was a waste of time and money. Even the boot camp director did not guarantee results. But Kara did not want to leave any stone unturned.

“I think a lot of people thought we were a little crazy,” Kara said. “You don’t know what you would do unless you’re in that situation.”

Self-employed as a freelance writer and able to take her work with her, Kara pulled Ainsley out of Sherrard Middle (after getting homework from her teachers) and headed to Lancaster for two weeks, where Ainsley underwent about four hours of therapy a day.

“The whole idea was to limber up the spine to try to retrain the muscles and try to recenter her gravity,” Kara said. Ainsley came home with an exercise regimen to which she strictly adhered.

A year later, at a follow-up appointment, the “S” curve was worse. The director said they were doing everything they could, but it wasn’t working. Kara said she knows of other patients who improved there, but Ainsley wasn’t one of them.

Third in Line

Kara still was not ready to give up. The boot camp director recommended Dr. Randal Betz in Princeton, N.J., who had pioneered a procedure for scoliosis called vertebral body tethering, in which a nylon cord is attached to screws on the affected vertebrae. As the patient grows, the spine straightens out, similar to how orthodontic braces work, Kara said. The procedure had been used for years to correct other problems, but about four years ago, Betz and his group were the first to test it and use it for scoliosis.

It was less invasive than rods, had a shorter recovery time, provided the patient more flexibility and did not involve fusing the vertebrae.

Betz evaluated Ainsley in July 2014. At this point, she had a thoracic curve of 65 degrees and a lumbar curve of 51 degrees. The optimum for vertebral tethering was 60 degrees or less, Betz said. He also tested her to determine how much growth she had left and how flexible her spine was – in both areas, it was not enough. Three strikes, and Ainsley was out.

“We were pretty much devastated. We were hanging our hats on this as our last chance,” Kara said.

Instead, they scheduled traditional fusion surgery with Betz for late September 2014. But when Kara called him in mid-September to make final plans, Betz said Ainsley may be a candidate for something new – a hybrid surgery that includes both a rod for the upper (thoracic) curve and a tether for the lower (lumbar) one. That would provide Ainsley more flexibility in the lumbar region.

Betz and his team successfully performed the first of these hybrid surgeries that month. They performed another in October.

The surgery was so new, Kara said she wasn’t sure they should go for it. Ainsley would be the third patient. Betz assured her “you don’t burn any bridges” with the tethering procedure.

“He actually said to me, ‘If she were my daughter, I would do it.’ I really needed somebody to tell me that.”

The eight-hour surgery took place on Nov. 17, 2014, at Mount Sinai Hospital in New York City.

Everything went as planned, except for a post-surgery lung collapse. Ainsley was stable within an hour, however, Kara said. Ainsley remembers the episode because of the pain when her medication was canceled out by Narcan in order to start a different medication. Ainsley said that was the wort part of the experience, but it only lasted about a minute and a half.

The price tag was a staggering $185,000. At first, John’s insurance was only going to cover $20,000. Local 3 “went to bat” for them, however, Kara said, and eventually paid for the surgery.

Set Straight

Ainsley’s recovery was slow. Recovery from tethering is only six weeks, but the fusion surgery takes six months. By Jan. 2, though, she was back at school. Her activities still were restricted: no running, no horseback riding, no sports, no bike riding, no trampoline jumping. Fortunately, it was wintertime and too cold for most of those activities.

She lost 12 pounds “which she really didn’t have to lose,” Kara said, adding she hadn’t realized Ainsley would need 2,500-3,000 calories a day just to heal. She could have “chocolate donuts dipped in chocolate milk. She needed calories,” Kara said.

At first, it was hard for Ainsley’s younger sister, Sydney, 8, to understand the activity restrictions.

“Syd was constantly asking me to do stuff, and I was like, ‘I can’t, I can’t.’ She kind of understood. If she had been any younger, like 4, it would have been harder,” Ainsley said. Once Sydney caught on, she was doing things for her sister and just hanging out with her big sister.

“Just having her in my presence made me feel better. Whenever Syd is around, it makes me feel happier,” Ainsley said.

“We’ve been tight all my life, but we’ve gotten closer” since the surgery, Sydney said.

Ainsley spent a lot of time reading and sleeping. “After that surgery, I realized the benefit of naps,” she quipped.

By spring, though, she “was starting to get pretty frustrated.”

Finally, in May at her six-month follow-up appointment, she was released for full physical activity. As soon as they arrived at the farm, she did cartwheels in the yard.

“The first one I did, I fell down. Story of my life right there.” She added: “It felt good to actually be able to do something. I think I did, like, six.” Sydney got the whole thing on video.

Kara said she still felt protective of Ainsley and wanted to tell her to stop, but “you have to trust the doctors it’s OK for her to do that stuff.” They said she is like any normal kid. “She is. She just has a bunch of hardware in her back,” Kara said.

Ainsley said she has no pain, and Betz said he doesn’t anticipate any problems or limitations down the road.

Betz, interviewed by phone, said he appreciated how Kara and John had “done their homework” and asked lots of questions.

“In order to advance this (field), it takes some very brave children like Ainsley, and her parents, who are willing to work alongside us,” Betz said.

Kara said even though the boot camp in Lancaster wasn’t successful for Ainsley, if she hadn’t gone, she might never have heard of Betz.

“It was worth it just for that,” Kara said.

Ainsley has been living life to the fullest since the day she spun cartwheels in her yard. She rode roller coasters at Kennywood and Cedar Point this summer, continues to be active in 4-H and joined Future Farmers of America, She kept the volleyball book this season. She enjoys reading, horseback riding, photography and hanging out with her family.

Kara said she talks to parents from all over the world who are interested in having the hybrid surgery or tethering done for their children.

“I don’t want people to think that their only option is to fuse their child’s spine all the way to their tailbone and all the long-term risks. … I’ll do everything I can to let people know this tethering is an option versus fusing.”