Twelve-year-old Kennedy Goodwin has been busy the past couple of years.
She met Michelle Obama, represented North Carolina as a “champion,” became a certified scuba diver and pretty much mastered middle school.
Oh yeah, and she got an ear.
I wrote about Kennedy two years ago, shortly before the first of two surgeries in which doctors built a detachable right ear for her.
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Kennedy was born with Goldenhar syndrome, a rare craniofacial disease in which facial features and the spine don’t form properly.
She has had 19 surgeries over the years and has dealt with multiple medical issues, including scoliosis and chronic sinus infections.
Having only one ear was mostly a cosmetic issue. But as she prepared for middle school – which can be a dreadful place for anybody – she and her parents decided the time was right for the ear surgery.
Doctors at Duke molded an ear out of silicone and colored it to match Kennedy’s skin tone.
“I’ve seen that it’s given her confidence,” Kennedy’s mother, Amy Hendershott, said of the ear. “I think it’s given her that little extra boost that she’s needed for middle school.”
Kennedy, who doesn’t like to talk much about the disease, put it simply: “It’s awesome.”
She clips the ear on each morning before she heads to Leesville Road Middle School in Raleigh, where she’s smart and has plenty of friends. At home each afternoon, she removes it.
“She is confident enough whether she wears it or not,” Hendershott said. “And she’s perfect whether she wears it or not.”
Kennedy’s family has preached all along a message of acceptance. We don’t all look the same. We don’t all sound the same. And that’s perfectly fine.
Last year, Kennedy was the North Carolina “champion” for the Children’s Miracle Network Hospitals.
In November, dozens of champions – kids from across the country with various forms of illnesses – traveled to Washington, where they met first lady Michelle Obama. Then they headed to Disney World for a few days of fun.
The month before, Kennedy had earned her certification in scuba diving, a step toward her dream of becoming a marine biologist.
It wasn’t easy, because she has lower-than-normal lung capacity. But in true Kennedy fashion, she kept trying.
Kennedy has inspired many people in her life through her resilience and I-can-do-anything attitude. Among them: her older sister.
Katie Hendershott, 21, is a junior at Appalachian State University. From a young age, she thought she would become a doctor.
But seeing Kennedy’s numerous hospital stays has inspired her to become a nurse instead.
“You really just see how much the nurses actually do, and how much influence they have over patients,” she said.
Katie Hendershott said she is proud of her sister for so many things. Mostly, she’s proud that Kennedy doesn’t let medical issues define her.
Kennedy is growing up, and there’s no doubt she will maintain that positive outlook.
Her medical journey isn’t over. Last fall, she had the first phase of surgery that will hopefully reverse the paralysis on the right side of her face.
Doctors removed a nerve in her leg and implanted it across her face. Next fall, they will remove a muscle from her groin and attach it to the nerve. Physical therapy will follow.
Her spine has begun to twist, and her rib cage isn’t growing like it should. More surgeries might be ahead for her.
In the meantime, Kennedy will continue cheering on her beloved Carolina Hurricanes, and she will raise money for Duke University Hospital through a radiothon in April.
Three years ago, Kennedy raised nearly $11,000 through the program.
This summer, she will travel to Greece with her grandparents. She’s counting down the days until the trip.
“We roll with the punches, don’t we?” Amy Hendershott asked Kennedy.
Indeed they do.
Sarah Nagem is editor of The N&O’s North Raleigh News and Midtown Raleigh News.
Want to help?
To support Kennedy through the MIX 101.5 Duke Children’s Hospital radiothon, go to http://bit.ly/1zOVMKb.