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Maryland boy who got double hand transplant can throw a football, write with pencil, do other routine tasks

Zion Harvey, who was the first child to get a double hand transplant, can now do many of the activities he once could not, including throwing a football, writing with a pencil and holding a fork.

Zion Harvey once dreamed of throwing a football like Ravens quarterback Joe Flacco.

But it was just a dream for the Owings Mills boy whose hands and feet were amputated at age 2 after a sepsis infection caused him to develop gangrene.

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Today, not only can Zion hurl a football, but he recently pitched a baseball over home plate at an Orioles game. He proudly points out that's farther than rapper 50 Cent's ball went when he threw a first pitch at Camden Yards. Zion can also write with a pencil, hold a fork, climb on the monkey bars, zip up his pants, and make a sandwich by himself.

He can perform such ordinary tasks after surgeons at the Children's Hospital of Philadelphia performed a groundbreaking bilateral hand transplant, giving him new hands and forearms — and the freedom to be a physically active boy.

On Tuesday, the 9-year-old returned to the Philadelphia hospital where doctors changed the course of his life and talked about his journey a year after becoming the first child to undergo a bilateral hand transplant.

The small boy with a big personality talked about all the new things he could do now with his hands, but was modest about what his journey represented. Sometimes people call him a celebrity and he doesn't like it.

"The only thing that is different is before I had no hands and now I have two hands," he said. "Everything else is the same. I am still the same boy."

His team of doctors see it differently.

"Zion is a pioneer whose success provides hope for other children who need hand transplants," said Dr. N. Scott Adzick, surgeon-in-chief at the Children's Hospital of Philadelphia.

The hospital has fielded 250 calls from the parents of children who want the same surgery. Officials are figuring out who will be the next best candidate.

"I'm hoping in the future that we'll do a lot more of these," said Dr. L. Scott Levin, Zion's lead surgeon and director of the hospital's hand transplantation program.

The road to getting new hands was long, and sometimes difficult, for Zion and his family. A team of 40, including nurses and other staff from plastic and reconstructive surgery, orthopedic surgery, anesthesiology, and radiology, took part in the 10-hour operation. They came from Penn Medicine, the Children's Hospital of Philadelphia and Shriners Hospitals for Children.

After the surgery, Zion spent two months at the hospital recovering and participating in rigorous occupational and physical therapy.

He then returned home, where intense daily therapy continued at Kennedy Krieger Institute in Baltimore. Because Zion lost his hands at such a young age, he had no recollection of how to use them.

When he first arrived at Kennedy Krieger he could wiggle his fingers, but had no feeling in his new limbs.

He spent up to eight hours a day performing exercises that would help his brain learn once again to communicate with his limbs. Other exercises helped his muscles and tendons gain strength and flexibility. In between exercises, he also went to school at Kennedy Krieger.

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Therapists incorporated his interest in sports into therapy. They started with basketball and progressed to golf, pingpong and baseball. About four months after surgery, Harvey had active thumb motion and could hold and turn a key, play Connect Four and snatch cookies, said Gayle Gross, one of his occupational therapists.

His recovery hit a turning point at about seven months, when he started to feel sensations. His skills have picked up steadily since. Tuesday in Philadelphia he gave fist bumps, picked up a bag of Skittles candy and ran around a radio studio grabbing at things.

There were ups and downs throughout the process. As with all transplants, he must take daily immunosuppressant drugs, so his body does not reject his new limbs. Zion underwent a kidney transplant at age 4 and already was taking the drugs, making him a good candidate for the hand transplants, but doctors had to adjust the medications in the first six months after the surgery when his body seemed to be rejecting the new extremities.

While he was mostly enthusiastic during therapy, he didn't like some of the tedious exercises, his therapist said. He also didn't like how the electrodes used to stimulate movement in his limbs and hands felt. He needed to be hospitalized a few times for bad colds because of his weakened immune system, his mother, Pattie Ray, said.

Doctors track Zion's rehabilitation using brain mapping, so they can link therapy to what is going on in his brain. They have watched the parts of his brain that control hand movement steadily come back to life. Doctors will monitor Zion for the rest of his life. The growth plates in his limbs were left open so they will continue to grow as he does.

A round-faced, bright-eyed youngster, Zion never let the fact that he didn't have hands slow him down. He could strum a guitar, play foosball, scroll through his mom's iPhone and feed himself. But there were some things he couldn't do.

His mother wanted him to be able to do things other children could do. She took him to Shriners Hospitals for Children in Philadelphia looking for suitable prosthetics. The boy never found a pair he liked. The path toward hand transplants began after Ray was introduced to Levin, the lead surgeon on Zion's transplant.

Ray said she often looks at her son and his new hands in awe and disbelief. It hurt to watch parts of the recovery when he struggled, but she knew Zion was strong-willed and would push through.

"It has been a long journey for us — and one well worth it," she said. "I get to see him in a better place, doing things that make him happy."

Zion's surgery is now part of a growing transplant field, which has moved beyond internal organs to extremities like hands, arms and even faces. In 2012, a group of Johns Hopkins doctors transplanted arms on a soldier injured in the Iraq war, and the University of Maryland Medical Center performed a face transplant that same year.

Levin performed a hand transplant on a woman in 2011.

"It is the continuation of the story of transplants," Levin said.

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