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Double amputee, 13, now walking upright, wants to inspire others

  • http://media.charlotteobserver.com/smedia/2013/12/19/21/14/eFIxs.Em.138.jpeg|207
    TODD SUMLIN - tsumlin@charlotteobserver.com
    “I like to see smiles on other peoples’ faces,” says Hailey Cruse of Denver, N.C..
  • http://media.charlotteobserver.com/smedia/2013/12/19/21/14/1nA0b7.Em.138.jpeg|386
    TODD SUMLIN - tsumlin@charlotteobserver.com
  • http://media.charlotteobserver.com/smedia/2013/12/19/21/14/WIy2o.Em.138.jpeg|208
    PHOTOS BY TODD SUMLIN - tsumlin@charlotteobserver.com
    Peyton Cruse, left, walks with his sister Hailey at Level 4 Orthotics and Prosthetics in Charlotte Thursday. Hailey recently underwent a double amputation to give her more mobility.

A few weeks ago, double amputee Hailey Cruse stood up and walked upright for the first time in her life.

It was also the first time in memory the 13-year-old had ever been pain-free. A door for new possibilities opened for her: wrestling, soccer, track, volleyball.

Hailey, who lives in Denver, N.C., was born with a form of skeletal polysyndactyly, a disease that causes skeletal malformation in lower limbs, hands and feet. The congenital condition made it impossible for her to walk normally and caused constant pain.

In August 2012, Hailey’s left leg was amputated at the knee on a doctor’s recommendation. In August of this year, she decided to have the right leg amputated.

On Thursday, Hailey used a walker to enter Level Four Orthotics & Prosthetics in Charlotte where she had been fitted with new prostheses. Her choice of decorations for the prosthetic limbs were multicolored peace symbols; her new Nikes sported hot pink shoe strings.

Along with Hailey were her 10-year-old brother, Peyton, who is also a double amputee, and their mother, Misty Casteen, 34, whose right leg had been amputated when she was 3. All three were born with the same disease.

The family of amputees decided to share Hailey’s story at a media event, saying they wanted to inspire others.

“If Hailey can teach one more person that life isn’t all bad and to make the best out of the worst situations, then this is worth it,” Casteen said. “She’s a very brave little girl.”

Over the years, Hailey had numerous surgeries on her legs. But nothing helped, and her mobility remained limited. The condition also caused stress on the nerves in her legs, and the pain never let up.

Casteen said her daughter kept going without complaint – walking bent over or sometimes crawling.

“Hailey always had a smile,” Casteen said. “But behind the smile she was hurting.”

Physical therapy

About seven years ago, her brother’s legs were amputated, and his pain-free lifestyle inspired her.

In 2012, Hailey’s left leg was amputated at Duke University Hospital in an effort to help her gain mobility. Later, it was determined the amputation of the right leg also would be necessary to give her a level of function that would allow her to walk.

Hailey and her mother talked about what to do. Then Hailey decided: She chose amputation.

“She was tired of living in pain,” Casteen said.

About a year ago, Ben Walker, lead prosthetist at Level Four Orthotics, began working with Hailey and found her remarkably positive despite all that had happened to her.

“She’s truly unique,” Walker said. “She’s outgoing and ready to get on with her life.”

He was present when Hailey stood up and walked upright for the first time.

“Every time I see a person stand up and walk it puts tears in my eyes,” Walker said. “It’s a moment that will never leave your heart.”

The next step for Hailey, who is a seventh-grader at Mill Creek Middle School in Denver, is learning to use her prosthetic limbs. After Christmas, she’ll begin physical therapy sessions.

“She’s got a long road ahead,” Walker said. “But it’s a challenge she’ll overcome, I have no doubt. “

Richard Riffle, clinical prosthetic director at Level Four, said Hailey will have to learn such simple things as how to get up from a table.

“And when she falls, how will she get up?” he said. “She’ll learn to adapt. She’ll learn how to get up and down steps and slopes. Life is not on a nice flat plain.”

Riffle also thinks Hailey is up to any challenge.

“She’s had a whole life of challenges,” he said.

On Thursday, Hailey met with reporters and talked about how before the amputations, she smiled even though she didn’t feel like it because “I like to see smiles on other peoples’ faces.”

No limits

She dreamed of doing things such as running track but woke up to the reality she couldn’t.

Hailey recalled the moment things changed for her: standing and walking upright on two feet for the first time.

It was a moment of happiness and excitement, she said.

Now, with a little work, many of her dreams can come true. Hailey plans to start an exercise program to get in shape for the middle school wrestling team next year. Learning to play guitar is also on her want-to-do list, along with running track and volleyball.

Her favorite subject in school is math, and she likes pop singers such asKe$ha. Hailey collects peace signs because “I want to bring peace to the world.”

For her, the world has no limits anymore.

“Looking to the future, I want to be athletic,” Hailey said. “And not give up.”

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