Anthony Wainess will be quick to tell you that he’s the Bionic Boy. But unlike other 11-year-olds who may claim they’re Batman or Superman, Anthony is telling the truth.
He really does have artificial body parts, and like the tiny slot cars he races for fun, he, too, can be remote-controlled.
In 2013, Anthony, who lives in Squaw Valley, became the first person in the United States to undergo a procedure that implants magnetic titanium rods into the back to correct severe scoliosis. The rods are lengthened by remote control over time so that they grow along with Anthony’s bones as he ages.
The procedure – for which the U.S Food and Drug Administration granted Anthony special approval before officially approving it last year – is designed to avoid numerous surgeries often required for early onset scoliosis, a rare form of the spine-curving disease that can interfere with lung function and can be fatal.
“I don’t feel the rods inside of me, but I feel them when they’re doing the extensions. It doesn’t hurt; it just feels like something’s moving inside of you, basically,” Anthony said.
“I can tell the difference. My back feels a lot straighter. Before, my back was really curved so I was always, like, slanted to the side. I wasn’t really ever straight when I stood up, and I could feel that all the time, so it was kind of frustrating.”
Anthony’s not at all shy about what he has gone through. His fellow students at Dunlap Elementary School have seen the X-rays – two bright lines shining through his skeleton where the metal is positioned. He recently put on a tuxedo and traveled with his family to Newport Beach, where he stood before hundreds of adults to talk about his experience at a conference hosted by Ellipse Technologies, the company that created the procedure.
But with his differences comes challenges. Anthony is fragile – literally. The special rods in his back have broken more than once. That’s why last month, when his father, Steven Wainess, received a call that Anthony had been attacked by another student at school, he was more upset than most parents.
“They started talking about how his foot and his leg was hurting and he was bruised, and the only thing that was going through my mind was, ‘What did this do to his rods?’ ” Wainess said.
“It’s one thing to have a bruise and have it go away, but to have to go through another major surgery – it’s painful and expensive and time-consuming. It’s still on my brain. I still don’t know if the incident resulted in some kind of fracture or could cause screws to come loose.”
Wainess filed a police report against the student who allegedly attacked his son. Anthony blacked out during the altercation, and Wainess worries he will have problems going forward. What if something else happens and he has to undergo another surgery?
The procedure is something for which Anthony’s parents had long hoped. Dr. Behrooz Akbarnia, medical director of the San Diego Center for Spinal Disorders, ultimately agreed to become the first U.S. doctor to lead the surgery.
“The procedure was a huge thing for us,” Steven Wainess said. “In law school, they told us never be the first to do anything. We had so many emotions about it, but we were really desperate. We were ready to sell everything we had and move out of the country to where they were doing the surgery,” he said. “We just want to make sure he’s going to be OK.”
Valley Children’s Hospital in Madera is the only hospital to offer the service in Central and Northern California, according to spokeswoman Zara Arboleda.
“As soon as the FDA approved it, we were the first to do it (in the Valley). It was important for Valley Children’s to bring in this cutting-edge technology, because it is a minimally invasive procedure that gets kids back on their feet quicker,” she said.
“Before, the only way to do these types of corrective procedures on a child’s spine was to cut them open – sometimes as frequently as every six months. This means less stays in the hospital and less risk to their health.”