Scoliosis, a condition that causes the spine to bend out of place, is often listed as one of the most painful conditions you can have. But we don’t normally think of it as a life-threatening diagnosis.
That wasn’t the case for 19-year-old John Sarcona, who was rushed to the hospital two years ago with scoliosis so severe doctors say his spine was bending "by the hour."
Sarcona was born with a form of scoliosis called kyphoscoliosis, where the spine bends both sideways (like regular scoliosis) but also hunches forward.
Thankfully, after 18 surgeries and years of pain, Sarcona’s story has a happy ending, which the NewYork-Presbyterian Hospital is sharing with the world.
Sarcona told Good Morning America that until age six he was "a normal kid."
"I didn't have any restrictions, even from early signs of scoliosis, until we started to see it was more prominent."
But after his symptoms emerged, Sarcona was forced to undergo corrective surgery every six months, and made to wear a plastic brace over his body up to 22 hours a day.
At one point, Sarcona needed emergency surgery when metal rods inserted in his spine shifted to stick out his back. The boy shrunk to less than 80 pounds as he recovered in hospital.
Even when the implants were working well, the extreme curve of Sarcona’s spine made it hard for him to breathe or walk up stairs without pain.
But along with physical pain, Sarcona’s appearance and being kept apart from other children weighed him down.
"As he was getting older," his mother Joanne said, "not fitting in was really starting to take a toll on him."
What really upset Sarcona was that his spine never corrected itself. After years of wearing his brace and undergoing surgery, his body was still bending.
By the time he arrived at NewYork-Presbyterian in 2016, Sarcona’s back was shaped like the letter C, and slowly suffocating him.
"Basically, he was being crushed to death," Joanne said.
Doctors performed emergency surgery on Sarcona’s spine, then attached his head to a weighted metal halo that gradually stretched it back into place.
Despite the intense rehabilitation, Sarcona noticed results immediately.
"It was crazy to see... in that first week my neck started to straighten out," he remembered. "That was special for my parents to see how much better I was looking. It definitely put a smile on my face."
He added that the adjustment felt "like my center of gravity had changed."
"I felt so much straighter sitting up on my bed for the first time."
Today, Sarcona is seven inches taller than he used to be, plays basketball and golf, and is even learning how to drive - a world away from when it seemed like his own body was trying to kill him.
"We learned in our time of challenge [to] put your faith and trust on overdrive," Joanne said.
John is starting college, and hopes to become a doctor someday so he can help people the way doctors have helped him.