August 6, 2021

UW Health Kids gives girl with rare bone disease a chance to have normal childhood

A little girl with dark blonde hair

Madison, Wis. — When 1-year old Raleigh Frank fell and broke her leg in 2018, her parents assumed that a leg cast and some patience is all they’d need before their daughter was back to being the rambunctious little girl she’d always been.

But when her tibia didn’t grow back the way it does for most people, doctors at American Family Children’s Hospital in Madison discovered that Raleigh’s chance of growing up like every other kid was no longer certain.

Dr. Pamela Lang, an orthopedic surgeon at American Family Children’s Hospital, diagnosed Raleigh with tibial pseudoarthrosis, a rare condition in which there’s an imbalance between the cells that make bone and the cells that destroy it. It is considered one of the most challenging and misunderstood conditions in pediatric orthopedics today.

In Raleigh’s case, the “bone-eating” type of cells were overactive and prevented her tibia from growing back and healing properly. Surgical intervention, including bone grafts and placing of a rod inside the bone to promote growth, has been the standard of care for most children with tibial pseudarthrosis. However, due to the weak healing power at the fracture site, children often end up re-fracturing the bone and requiring additional surgeries to fix it. If surgery continues to fail, orthopedic surgeons often recommend amputation.

Luckily for Raleigh and her family, Dr. Lang and her team decided to try a new approach. After undergoing her third surgery in two years, pediatric nephrologist Dr. Neil Paloian gave Raleigh infusions of bisphosphonates, a class of medication most commonly used to treat osteoporosis in older adults. The team hoped that in conjunction with the surgery, the infusions of this medicine would simultaneously suppress the cells that were destroying the bone in her leg and allow more bone growth and formation to occur.

“If we didn’t try this new approach, I fear we would have been repeating the same thing over and over and not getting any better results,” said Dr. Lang. “In my mind the process is never over, but we were committed to giving Raleigh the chance of being a regular kid, because she hadn’t really been able to do that for the last few years.”

At her last check up in May, Raleigh and her family received some great news. The treatment is working. Although she still needs to wear a brace, her leg is healing and her bone is growing, so much so that Raleigh is running around, chasing after her family’s chickens, and even starting to do ballet.

“It’s definitely a big relief to know that Raleigh can finally have some sense of normalcy, because her life has been so abnormal for so long,” said Lindsey Frank, Raleigh’s mom. It’s amazing that she can now run, and skip and ride a bike. We have been blessed with a lot of great doctors who fought for her, and I am very appreciative that we ended up with the team that we did.”