At 12 years old, Kylie Anne Nevel overcame a battle with juvenile idiopathic scoliosis.
Now, she’s looking to give back after her community helped her when she was in need.
Kylie is helping to coordinate a community blood drove from noon to 5 p.m. Sunday at the Maple Grove United Methodist Church. The blood drive is being hosted by Geisinger Blood Center. That same church held a blood drive in her honor as she underwent a 12-hour surgery to correct her spine that was affected by idiopathic scoliosis.
“I was lucky to not need blood for my surgery, but knowing that there are some people out there that don’t make it through surgeries because of a blood shortage, makes me sad and it hurts,” Kylie said. “I want to help any way I can.”
That desire to give back came after Kylie endured two years of medical battles.
Kylie was diagnosed with juvenile idiopathic scoliosis during a routine checkup in January 2012. Nicole Nevel, Kylie’s mother, said that the family was eventually referred to the Shriners Hospitals for Children in Philadelphia.
Nicole, 39, said that her daughter’s long hair helped to hide a curvature in her spine.
“Once the doctor had pointed out the curvature, we were able to notice it. However, it never caused her any pain — an occasional backache after a long day was all,” she said.
Kylie said she was very confused when she first received her diagnosis, and struggled to question how it happened. Nicole added that the family was in a state of shock, and quickly added Kylie to a lengthy waiting list for surgery.
While waiting for the surgery, Kylie was outfitted with a body brace. Nicole explained that Kylie’s initial x-rays showed a curvature of 41 degrees thoracic and 42 degrees lumbar.
“Traditionally, bracing only works to control a scoliosis curve that is under 20 degrees,” Nicole said. “It was explained to us that the brace was designed to keep her curve from progressing, not to fix the curve.”
Kylie was fitted for a Boston brace, a hard plastic brace on the outside with molded foam on the inside. She had to wear the brace for 23.5 hours a day for three months. Nicole said the brace went from her daughter’s armpits all the way down to the bottom of her hips.
Kylie said the brace hurt at first, but once she got used to it, it felt weird to not have it on. Kylie tried to make the best of it in the classroom.
“I showed off my brace to everyone, it had butterflies on it,” Kylie said. She even had everyone knock on it, but that didn’t stop some of her classmates from bullying her.
“They said things like ‘don’t break your back again’,” she said.
Kylie said she always wanted a younger sibling, and the Nevels soon found out they would be welcoming a boy, Ben, to the family. Her medical condition, however, meant that she wouldn’t be able to carry her younger sibling around.
The operation
At another exam in June 2012, Nicole said the doctors said the curvature increased to 43 degrees thoracic and 46 degrees lumbar. That’s when Kylie’s family and doctors decided that surgery was in her best interest.
Nicole added that it became visibly noticeable that Kylie’s hips and and shoulders didn’t align properly.
Kylie’s thoracic spine (middle part of the spine) was also beginning to rotate, which could have led to internal organ issues.
“Ours hearts sank,” Nicole said. “It was heartbreaking to think that our little girl would have to go through major spinal surgery, but without it, her spine would continue to curve and would cause her pain and arthritis as an adult.”
The procedure that Kylie underwent is called the Anterior Spine Tethering and Lumbar Stapling. Nicole explained that it is was a new, fusionless procedure. When Kylie underwent the surgery on October 23, 2012, she was only the 22nd child in the country to undergo the procedure.
During the 12-hour procedure, surgeons placed titanium screws in Kylie’s thoracic spine, and used a polyethylene-terephthalate flexible cable to connect the screws and compress the spine to help straighten it. Nicole explained that the procedure is a “growth surgery” — as Kylie grows, her spine will continue to straighten.
It was at that time that members of the Maple Grove United Methodist Church held a blood drive in her honor. Nicole said that the turnout for the blood drive was massive.
Standing tall
After the surgery, Kylie had to wear another full brace 24 hours a day for 30 days to protect her spine. She was initially on paid medications, but Nicole said her daughter was determined to heal and move on with her life.
She started physical therapy after three months to help get her back in shape.
“Eventually, she was only going twice weekly, and then once a week until we decided she was doing so well, she could continue on her own,” Nicole said.
Today, Kylie still has to wear a providence brace at night. Nicole said doctors have told the family that Kylie might be brace free by June.
During the day, she’s doing what a girl should be doing at her age — running, jumping, swimming and dancing. She is also practicing to be an Oompa Loompa in the “Willy Wonka and the Chocolate Factory” play at Lake-Lehman High School.
“I would’ve never thought I could have made it through all of that, but I did,” Kylie said.
Source : Times Leader , 24th Oct 2014
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