Sporting a Superman sock on her left foot and Batman on her right, Bella Burton, a 12-year-old from Woburn, Massachusetts, listens intently to her orthopedic surgeon Dr. Lawrence Karlin. Lots of people mix up their socks, he tells her. “You should really stand out from the crowd. Wear unmatched shoes.”
She chuckles and pretends to ponder his advice. Ultimately, Bella decides against Karlin’s fashion tips.
The exchange is typical of Bella and Karlin, says her mother Rachel.
The pair first met in 2007 at the Boston Children’s Hospital Orthopedic Center when Bella was just a toddler. Genetic experts suspected Bella had Morquio syndrome, a rare birth defect whose symptoms include abnormal bone and spine development and possible heart and vision problems.
As Bella underwent genetic testing, Rachel and her husband Ed faced a flutter of uncertainty. “We were so new to Boston Children’s, and Bella’s diagnosis wasn’t confirmed.”
Specialty care for Morquio syndrome
Karlin, however, has been the one constant, re-shaping Bella’s bones and helping her set a foundation to face an uncertain future. Morquio syndrome is a progressive condition, so Bella’s symptoms could worsen with age. Like many children with rare conditions, Bella will need multiple specialists during the course of her life.
Parenting a child with a rare condition with symptoms that vary from child to child can be difficult, says Rachel. Although Bella’s clinical team is quite large, she’s usually reserved around doctors. It’s different with Karlin, says Rachel. “She’s very open with Dr. Karlin and tells him exactly how she’s feeling.”
Bella’s first surgery was a spinal decompression and surgical fusion at age 2. Morquio had damaged her vertebra, and a simple fall could have left her paralyzed. “Bella’s condition was neurologically precarious and life threatening,” recalls Karlin.
Finding Bella’s voice
Since then, Karlin has focused Bella’s orthopedic care on the quality-of-life challenges that Morquio syndrome brings, helping her understand that many times surgery is a choice — not a medical necessity. With each procedure, Karlin discusses — with the entire Burton family — the benefits of the surgery and any potential problems linked with the decision to proceed with, postpone or bypass surgery.
“Dr. Karlin always makes sure to direct the conversation to Bella. She’s had a say in some very mature decisions, and when she’s older and needs to make them on her own, she’ll have the confidence to choose because she’s had so much say at such a young age,” says Rachel.
Her most recent surgery to correct anomalies on her foot was a big decision.
“Her feet are rigid and don’t contour very well when they are in shoes, so it was difficult for her to walk,” explains Karlin. “She’s pretty independent. We want to give her a comfortable foot to walk on.”
The Burton family had carefully considered the timing and thought about scheduling the operation on both feet in October 2016.
At a pre-op visit, Bella piped up, asking Karlin, “Can we do one now and one later?” She had just started middle school and didn’t want to be cooped up in a wheelchair for an eight-week rehabilitation.
Bella and Karlin conferred, and he agreed that Bella’s request made sense. “I think it’s important that she keeps moving,” said Karlin.
George: The sidekick
Bella does have a little extra help in the mobility department. In January 2015, Bella was paired with George, a Great Dane service dog.
Before she met George, Bella’s Morquio symptoms had become progressively more painful. “Her knees hurt. Her hips hurt. She told us, ‘I’m going to be on crutches,’” says Rachel. Many children with Morquio wind up in a wheelchair by early adolescence.
Bella, however, has defied expectations.
After meeting another family with a mobility dog, the Burtons contacted the Service Dog Project, where Bella met George. The Great Dane joined the family soon after.
Since then, with George at her side, Bella’s strength and mobility have improved. She relies less on her crutches and wheelchair and more on her best friend George.
Though she knows she’ll continue to face challenges due to Morquio as she grows, Bella is confident she can face them all and thrive with George, her family and her doctors at Boston Children’s right by her side.
Learn more about the Boston Children’s Orthopedic Center.