Trips and tumbles are a normal part of childhood. But what if every misstep brought the potential for weeks in a cast and months of physical therapy? That risk is Taylor’s reality — she has a condition called osteogenesis imperfecta, or brittle bone disease.
An x-ray soon confirmed Taylor’s broken femur. To her family’s shock, it also indicated a second break: her tibia bone had been fractured at an earlier time. Taylor’s x-rays were sent to Stephen Sundberg, M.D., a pediatric orthopedic surgeon at Gillette Children’s Specialty Healthcare, who discovered two more previous fractures and confirmed her diagnosis. Sundberg admitted her to Gillette that evening, and the next morning she’d been placed in a full-body Spica cast to allow her fragile bones to heal.
“We quickly learned that when Taylor broke a bone, we wouldn’t always know that something was wrong,” explains Kim. “X-rays can miss things. And Taylor’s high tolerance for pain means she won’t always complain if something hurts.”
Today, thanks largely to bone-strengthening infusions Taylor receives, her fractures have become less frequent and less severe. While effective, the treatment will never eliminate the risk of breaks. As a result, her family walks a fine line—giving Taylor the freedom to be independent while also instilling the importance of caution. “Taylor’s personality is such that she’d be frustrated by feeling limited,” says Kim. “We don’t want to put her in a bubble or make her feel different. OI is all she knows — it’s her normal.”
From frequent orthopedic care to physical therapy, Kim and Ethan say they’re grateful to their Gillette team for supporting them since the beginning. “They care about our family,” says Kim. “It amazes me how many people it takes to care for one child with Taylor’s condition.”
Taylor, at left, is pictured with her little sister Aubrey.