Scoliosis and degenerative muscle disease

Eleven year old Kaylee Sims is always looking for ways to express herself, and being diagnosed with scoliosis has not held her back from anything in life, including performing in a dance recital just weeks after her spinal fusion. 
 
Since birth, Kaylee has been a patient at Children’s of Alabama. When she was 2 years old, she was diagnosed with severe scoliosis and degenerative muscle disease. Her mom, Heather, noticed floppy muscles and loose joints when Kaylee was a baby and began working with pediatricians and geneticists at Children’s. 
 
Kaylee struggled to run and walk quickly, and she had to work twice as hard to use her muscles. But she never let this get her down. “All of her doctors were so shocked that she could even walk let alone dance, so she is pretty amazing,” Heather said. 
 
In February, Kaylee’s doctors decided she needed halo traction surgery—a way to slowly stretch the spine, pulling the head and spine upward. A metal ring, or “halo,” is attached around the head and works like a pulley system, with weights being added to slowly pull and correct head and spine alignment. 
 
Three days after her surgery, Kaylee went into respiratory failure and was intubated for four weeks in the pediatric intensive care unit (PICU). “They were still able to get her up and walking around the unit and encouraged her to make her goals each day and work hard to recover,” Heather said. 
 
During her two-month stay at Children’s, Kaylee became friends with her nurses. “She would play games with them and make up TikTok dances with them, and they would joke and laugh and have fun together,” Heather said. “They had a spa day with her, painted her nails and did her hair and all that fun stuff. They just encouraged her and kept her spirits up when things were extra hard.”
 
In April, doctors performed spinal fusion surgery, which reshapes the spine by fusing bones together. After a successful surgery, Kaylee impressed her physical therapists by being able to walk, do exercises and gain weight. She left the hospital just a week after her second surgery. 
 
Today, Kaylee is still getting used to her new fused spine, but she is doing extremely well. Just weeks after her spinal fusion, she took the stage in her dance studio’s recital, and she has performed in two theater shows. “She worked hard and did her PT and got up to where she could do stuff like that,” Heather said. “She’s still so joyful and has the best attitude.” 
 
Kaylee still has fond memories of her time at Children’s including a dance competition she started among her nurses. She taught them a TikTok dance, judged the contest and picked a winner. She says it’s her favorite memory of her stay in the hospital.
 
Heather says going through this experience has made Kaylee a much more sympathetic, kind-hearted and loving person. For other hospitalized children, Kaylee has some advice: Make friends with your nurses and just have fun. It worked well for her.