Dancing Toward a Better Future: Charleigh's Scoliosis Journey
For 7-year-old Charleigh, life with spinal muscular atrophy (SMA) has never been defined by limitations. Instead, it has been defined by perseverance, family support and an extraordinary team working together to help her thrive.
At 2 months old, Charleigh became the first child at Le Bonheur to receive the gene therapy Zolgensma for SMA. Although the therapy changed the course of her disease, her neuromuscular scoliosis continued to worsen as she grew.
By 2024, the curvature had become severe enough to impact her lung health. Led by Le Bonheur and Campbell Clinic orthopedic surgeon Jeffrey Sawyer, M.D., and her multidisciplinary care team, the family decided to move forward with surgery.
Because of the severity of Charleigh's curve and the unique challenges associated with SMA, Sawyer recommended halo gravity traction before surgery.
“Halo traction gradually realigns the spine over time, making correction safer than trying to fix a severe curve during a single surgery,” Sawyer said. “For children with SMA, whose bones are often softer because the condition limits mobility and weight-bearing activity, that gradual approach can be especially important. It also gives our team and the family time to prepare for surgery, not only medically, but by building the trust and relationships that are essential to a child’s care both during treatment and long after surgery.”
After five weeks of halo traction, Sawyer with the assistance of Le Bonheur and Campbell Clinic orthopedic surgeon Keith Orland, M.D. performed Charleigh’s MAGEC rod surgery, using growth-friendly spinal implants to correct her scoliosis while preserving room for future lung and spine growth. Because SMA can affect bone quality and increase surgical complexity, the team used advanced CT-guided navigation technology as well as three-dimensional spine modeling to enhance precision and safety during the procedure.
According to Sawyer, the most important part of Charleigh’s care wasn’t technology, but the multidisciplinary team that guided every decision. By bringing together specialists across neurology, pulmonology, orthopedics and rehabilitation, her care team ensured every aspect of her health was considered.
"SMA affects so much more than one body system," her father, Charles, said. "Every decision has trade-offs. Having all of her specialists working together means they're treating the whole child, not just her scoliosis."
One of the most memorable moments in Charleigh’s journey came during halo traction, when she danced with her father while supported by her gait trainer. “That moment perfectly captures who Charleigh is,” said her mother, Lacey. “She is determined to find happiness even in difficult circumstances.”
“Charleigh’s positive attitude, her encouraging, engaged family and the happiness she shared with everyone daily inspires us to continue to improve how we care for children and their families,” said Sawyer.
Today, after successful MAGEC rod surgery, Charleigh is sitting taller and breathing easier. For her family, the goal was never simply to straighten her spine, but to help her live more comfortably and fully. As she continues her journey with SMA, Charleigh’s resilience and joy remain stronger than ever.
More Comfort, More Possibilities: Blake’s Story
12-year-old Blake Lambert was born with a rare gene mutation called CAMK2A, which causes developmental delays and seizures. Since she was just 6 months old, she has been coming to Le Bonheur for her care.
Around three years ago, Blake was diagnosed with scoliosis. At first, her family tried to manage it without surgery. She used a molded wheelchair back to help support her posture, but she remained uncomfortable, leaned to one side and had difficulty going out and traveling like she used to.
As her condition worsened, Orthopedic Surgeon Dr. Stephanie Chen recommended spinal fusion surgery.
“Dr. Chen did an amazing job. She explained every detail and made us feel as comfortable as possible,” said Blake’s mom, Patricia.
After surgery, Blake began to improve. She no longer needs the neck pillow she once relied on to keep her head from falling to the right. She is more stable and comfortable overall
Today, Blake continues to receive physical therapy as part of her recovery. Her progress has made a noticeable difference in her daily life.
“We are deeply grateful for the care we have received at Le Bonheur,” says Patricia. “Having such high-quality care available close to home for years of treatment has been so important for Blake and our family.”
