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Kids Day: With 'cyborg' leg implant, Buffalo teen is on road to recovery

Eva Edwards, a 13-year-old with a wide smile and outgoing personality, has always tried to make the best of her situation.

Born with a congenital condition that caused her right leg to be much shorter than her left, Edwards' life has been filled with painful surgeries and procedures to gradually lengthen her femur. One of them involved the attachment of a large metal appliance to her thigh, an awkward contraption that the shy but creative girl nicknamed "Mister Clanky."

"It always made noise," Eva said with a smirk during a recent break from doing homework in her West Side home. "So like, OK, I'll call it Mister Clanky."

Despite the lighthearted nickname, Edwards couldn't stand the device and the limitations it placed on her mobility. So last July, when her doctor at the former Women & Children's Hospital offered an experimental new treatment, she and her family embraced it.

Eight months later, Edwards' legs are now almost the same length. She still needs crutches to walk as her body works to fill in the gap created by the device with bone. But her doctor predicts that, with therapy, she'll soon be able to walk normally. And those crutches, like Mister Clanky, will be a distant memory.

"She didn’t like the fact that her leg was so much shorter, but she was absolutely against having that external fixator on it," said Jeremy Doak, a pediatric orthopedic surgeon with the UBMD Physician's Group. "They have these things on them for months and months. I can imagine not wanting it either."

So last July, Doak and a team at Children's inserted a magnetically expandable rod in her femur. And for the next 80 days, four times a day, Eva and her mother, Eunice Deleon, attached a machine to her thigh that expanded her femur by a quarter of a millimeter.

"Before, she had all the tubes on the outside and you could see her skin and everything from the inside," Deleon said. "And it left a deep mark, a deep scar that she still has. It was a tough time. She cried a lot, like every day she had to cry."

There are no tears anymore. And though she still needs crutches to get around as her leg heals, Eva said she's happy with what she called her "cyborg" leg.

Her surgery was the first time Doak and the team he worked with had used the magnetic rod technology on a patient's leg. It had been developed for use on the spine, he said, but was recently made available for other applications.

Although Eva's doctors had never used the magnetic rod before for this purpose, she and her mother were confident that the process was safe. And Doak was honest about the fact that this would be the first time they had tried the new technology.

Eva Edwards shows an X-ray of the fix she received after life-changing leg surgery that spared her bullying at school and gave her more self-confidence. (Robert Kirkham/Buffalo News)

"She said, 'I would like to try that,' " Doak said. "Although it sounds silly when you tell the family that this is the first time you're doing it, I think it makes them feel a little bit more comfortable. Mostly I think they like that you're upfront with them."

Deleon and Edwards had nothing but praise for the team at Children's, saying that allayed the young girl's fears about surgery and turning what could be a traumatic process into "a nice experience."

Eva, asked about what she plans to do once she's fully healed, harbors no dreams about playing soccer or going for long runs. When the bone in her new cyborg leg heals, she just dreams of living the life of a normal kid.

"I dream about me walking around in school, just going and talking to my friends, not just sitting there and watching them talk to each other," she said. "And going back to annoying my brother."

For Doak and his team, seeing her progress, and especially her optimistic attitude, has been deeply gratifying.

"That's the great part about taking care of kids and doing what we do here at Children's. You have such an opportunity to impact their lives," Doak said. "We got her super, super close to equal. I think she's going to love it for the next 80 years of her life."

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