When Kalee Rae Holden (Rae) had a sudden growth spurt when she was in sixth grade, her mom, Cherie, didn't think much about it at the time but soon found out something was seriously wrong.

By RIMSIE McConiga
rmcconiga@leavenworthtimes.com

When Kalee Rae Holden (Rae) had a sudden growth spurt when she was in sixth grade, her mom, Cherie, didn’t think much about it at the time but soon found out something was seriously wrong.

When Rae became a cheerleader, Cherie noticed that one of Rae’s legs bent in an odd way. When her hands were on her hips, there was a slight twist.
“Kids become more private at that time as their body changes,” said Cherie. “We were going to go in late November to CoCo Keys Water Resort. She was trying on a new swimsuit and she said, ‘I look strange would you look at this.’ The hip that I always had thought was ‘attitude hip’ kicked out on its own, one shoulder was dropped and angled back. My heart dropped as I asked her to turn around and touch her toes. As she bent down she twisted and had a rib hump on her left side at the shoulder blade. My mind raced how did I miss this. We swam all summer in our pool. I coached her at cheerleading.”

When Rae was diagnosed with severe congenital scoliosis at 11 years of age, she was in shock and didn’t fully understand what was happening to her body when she looked in the mirror. At her vulnerable age, when kids are most in need of confidence, Rae was facing a tough battle.
Cherie tried to keep her composure when she heard the stressful diagnosis but her mind kept racing as she tried to process her daughter’s prognosis. She tried to calmly and rationally figure out what this health setback would mean for Rae’s future and what the next step would be.

“I was beating myself up for failing Rae,” said Cherie. “Once I was alone I screamed into a pillow and cried. I cried every time I was alone at the thought of how this is going to define and affect the rest of her life.”
Although Rae’s birth father had idiopathic scoliosis and she had a 33 percent chance of getting it, hers was in the congenital scoliosis classification and was caused by a birth defect that wasn’t obvious at birth.
As the family learned about scoliosis they found out it can be sudden and drastic or slow and subtle. Rae’s doctor told them once scoliosis is found it usually only changes a degree or three per year, but hers was changing at a degree per month.

“It was out of control and showed no signs of stopping,” said Cherie. “People can become severely deformed in the torso area, wheelchair bound and a simple trip could cause damage to the spinal cord. Your discs are shock absorbers and if not lined up properly don't work.

“We only fixed one of the curves. Her lumbar curve is still 42 degrees. She can only do what they call controlled chaos. During competition seasons she can have some back pain but never complains. She pushes herself. The doctors say that is good to not slow down.”
Rae soon had to quit bowling and wasn’t allowed to participate in any sports. Her body began to curve and she was soon unable to tie her shoes.
Cherie became used to the odd looks she would get in public as she dropped to her knee to tie Rae’s shoes.
When Rae turned 13 she underwent an operation to have her thoracic spine fused. Surgeons had to break four ribs that had webbed together with two titanium rods with lots of nuts and bolts. Her T2 to T12 vertebrae were fused.

Rae was the first person set for surgery on the day of the operation at Children’s Mercy Hospital, and her family was the last to leave the waiting room. Cherie ensured that she went into surgery with something to look forward to.

“Two days before surgery I let her try out for the musical “Through the Looking Glass” for the part of the Mad Hatter,” said Cherie. “So she went in with a light at the end of the tunnel and a possible goal. She took the surgery in stride with great strength and determination. The morning she was finally stable enough to move from ICU we received notification she had gotten the part. Practice was to start ASAP and she still had a week in the hospital, so they blocked around her scenes.”
With the help of physical therapy in the hospital she learned to walk again.
During her recuperation time back home, Cherie home-schooled her daughter for months until doctors thought the fuse was strong enough to return to school.

Doctors believed that clearing her to go to musical practice during this time was important because singing would be a great benefit to help heal the broken ribs and stave off pneumonia, plus, they knew it was the driving force behind Rae’s determination to recover.

Rae went back to school with the determination that scoliosis might have imposed a temporary detour to her busy life, but it would not sideline her ambitions.
She tried out for Color Guard and Winter Guard MCCGA and became the youngest person on the teams at Lansing High School and was chosen to compete. While her physical condition limits moving to higher levels because of the demand for tumbling and forward and backward rolls, she is becoming increasingly proficient in rifle and saber spinning.

“The guard brings a song to life on the basketball court,” said Cherie. “They are a part of the Boy Scouts adventure crew with dance, flag, rifle, sabers and costumes with makeup. They compete all over the state of Missouri.”
She also has been able to bowl again and has been a varsity bowler for Lansing High School the past two years and both years went to state.
While only one of the curves in her spine was repaired, her lumber curve is still 42 degrees. A curve of more than 40 to 45 degrees is considered abnormal curving of the upper back.

Rae is determined that scoliosis will never define her and she will push hard to accomplish everything she sets her mind to.
She is one of the founding members of the Sunflower Chapter of the National Scoliosis Foundation.
Thanks to her efforts and others in the group, she made such an impact before the USD 469 Board of Education that the board decided to do testing this year.

For Cherie, this experience has taught her a lot about not only her daughter’s indomitable spirt, but her own. Cherie had a feeling of helplessness after the diagnosis but her daughter proved to be the guiding light for the family during this difficult period.
“I think I took it so much harder then she did,” said Cherie. “At the time we all took it harder and we were angry we couldn't make it better. Here we are now waiting to catch her if she falls because she is reaching high.

“I have to say now with her activity schedule I am so busy getting her everywhere and watching her succeeding I forget sometimes that I thought this was the end. She has always been mind over matter and one day at a time. I couldn't be more proud. She is amazing and will always persevere. Rae is very determined and positively happy. She never said ‘Why me?’ She has always been an ‘OK, well what’s the next step, let's do it kinda girl.’”
Rae is planning her path to become a doctor and specialize in pediatrics. She is considering getting a bachelor’s degree in nursing and working while pursuing her ultimate goal in the medical field. Her mom believes that Rae will work hard to achieve her dreams.

“I think she is a good example of mind over matter. Define yourself. Find your love and passion and persevere. We don't have to be in a box or shut doors because we are different. Always look for a path or a way around it.
“She is the strongest person I have ever met. She can teach me how to be a better and stronger person and to never stop growing and that the mind must be open. She taught me that a heart can be bigger if opened and to never judge a book by its cover. We all have a story. Rae is in control, and a great writer of her life.”