Not many teenagers have 30,000 followers on their Instagram accounts.
Or have gotten fan mail from every continent except Antarctica.
Or have a video — showing them dancing ballet, on pointe, poised on the tip of their toes — that has gone viral on YouTube, Facebook and elsewhere, generating more than 27 million views in the last five months.
Then again, not many high schoolers are like Gabi Shull of Warrensburg, a 15-year-old dancer and cancer survivor with one leg surgically shortened and rotated 180 degrees to point backward.
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“I didn’t think it would get this much publicity,” Gabi said recently, seated with her family in her living room, “especially all these people finding my story and sharing it. I didn’t think it would get this much attention.”
What started as one Missouri family’s horror story has, in recent months, become a tale of worldwide inspiration regarding youth, cancer and determination.
When Gabi was 9, what she and her family thought was an ice skating injury ended up, shockingly, to be a diagnosis of a rare kind of bone cancer centered on her right knee.
The diagnosis of osteosarcoma led to an even more unusual surgery. Instead of amputating Gabi’s entire leg from the middle of her thigh down, a Kansas City surgeon performed a rotationplasty.
In the rotationplasty, Gabi’s leg was still amputated at mid-thigh. But instead of getting rid of the entire leg, the cancerous middle third of her leg, including her knee, was tossed away. The still-healthy bottom third of her leg, including her ankle and foot, was turned backward and surgically attached to her thigh.
That it looks odd is undeniable. Picture having your ankle where your knee is, having your heel face forward and your foot and toes point behind you. When Debbie Shull, 43, and Andy Shull, 44, a lieutenant colonel in the Air Force, initially heard about the surgery, they completely discounted it.
“You aren’t going to cut my kid’s leg off, turn it half around and give her a backward foot. No, no,” Debbie Shull recalled thinking.
That was before it was explained that the backward ankle and foot could then act as a healthy knee joint. Except for the odd aesthetic, it was perhaps the best option for a growing child, with fewer complications than other options such as artificial knees. This biological solution would grow as Gabi grew. With the proper prosthetic, she would have few limits.
He explained that the surgery, although rare, actually goes back to the 1970s. Only about 10 rotationplastys are done each year in the United States. “And that would be a high estimate,” Rosenthal said.
In 26 years of practice, Rosenthal said, he’s done only six, as they’re chiefly for children ages 6 to 12 under the rare circumstances that they have cancers similar to Gabi’s in similar places. The surgery, which takes four to six hours, saves nerves and vessels, reattaches muscle and tendons and links bones with carbon fiber plates.
“One of my other patients played high school basketball and even college basketball,” Rosenthal said.
Gabi wanted to dance. “Just getting to move freely,” she said. “I don’t know. I just love the movement of it.”
She and her three sisters — Maria, 19, Allyson, 16, and Christina, 10 — have danced competitively since each was about age 3: jazz, tap, hip-hop, ballet, contemporary.
Twelve rounds of chemotherapy followed Gabi’s surgery. She lost her hair. The chemicals sickened her. It took a year of painful physical therapy for her to regain proper movement in her reattached foot. But when she slipped her foot and ankle into a prosthetic leg, she could move freely.
“I basically told myself,” Gabi said, “get through chemo, learn to walk, then I could just dance again.”
So she has. By age 11 she once again was on stage. Home videos followed her progress.
“There were a couple of dances that were absolute tear-jerkers,” Debbie Shull said.
Within time, the non-profit Truth 365, formed in 2012 to advocate for more research into childhood cancers, took note of Gabi’s abilities. She became a spokesperson for the group, starring in a video, sitting on the couch in her living room, calmly showing her leg, explaining rotationplasty and slipping on her prosthetic.
Then in December, Gabi’s father shot a video of his daughter trying out a new prosthetic. It was a ballet foot, hand-crafted by Keith Andrews, a prosthetist at the Hanger Clinic in Independence. Gabi puts on the prosthetic. Within seconds, she’s up on pointe, on the tips of her toes.
“Live your dreams and don’t ever give up,” Gabi said.
The video on Truth 365 went viral. Mike Gillette, who co-founded the organization with Dena Sherwood, believes the appeal lies not only in Gabi’s determination, but also in the ease and comfort and confidence she shows she in herself.
“There are many kids,” Gillette said from his home in Virginia, “who might be embarrassed for just having acne, or being a little overweight, or having frizzy hair.
“But here’s Gabi with a backward foot, an amputation, and she does not let it get in her way. What Gabi has done is show that you can have this kind of surgery and live life to the fullest.”
Since the video was posted, Andrews at the Hanger Clinic said he has been contacted by people from as far off as Brazil, Argentina and Australia asking how they might also get a similar ballet prosthetic.
“I tell them the basic concept,” Andrews said, so they might get them made in their own local areas.
As for adapting dance steps or routines to accommodate Gabi? Kristen Kemp, the company director at Center Stage Academy, said she and other instructors did so initially. But that hasn’t been the case for nearly four years.
“She just figures it out,” Kemp said. “I give her all the steps I give the other advanced dancers.”
That, in itself, serves as an inspiration.
“A lot of other dancers, and me personally, look at that and go, ‘OK, if she can do that — if she can go from an amputation and this crazy surgery, and be back dancing, and doing everything, and never asking us to change the steps for her — if she can do that, whatever little thing we’re dealing with is not that big a deal.”
To say, however, that Gabi had never despaired would be going too far.
“She has had her moments when it gets very frustrating,” Andy Shull said.
There have been tears.
“Every once in awhile,” Gabi said, “maybe once every five months, if I’m going through something hard, if I can’t like pick up something in dance, I’ll be like, ‘Why is this happening to me? Blah, blah blah.’
“My mom will be like, ‘Gabi, you’re still alive. That’s the most important thing. And you’re dancing.’ Then I’m fine.”
Gabi will be part of at least 10 dances at a recital next week. Her Instagram and Facebook accounts continue to receive message from admirers, including children and families dealing with cancer.
“A lot of people tell me I’m an inspiration. … I don’t see it yet,” Gabi said, barely an hour before she would head to dance class. “I’m just going my own thing.”