Brave. It’s the word inscribed on the simple band Mary Tremper wears on her left wrist. The band is a reminder from her son Shane that she possesses the strength and courage to bravely face the future.
When Mary, a Boston Children’s Hospital Miles for Miracles runner, found the band in the hospital gift shop she knew it was from Shane. And as Mary has shared her son’s story with her teammates and listened to theirs, they have redefined brave, together. A few of their stories, including the Tremper’s, follow. …
A family’s journey with developmental dysplasia of the hip (DDH) typically starts when a baby’s pediatrician hears a click in her hips. The next steps often include an ultrasound and a follow-up with an orthopedic surgeon, perhaps a pediatric hip specialist.
College friends Tosha LoSurdo and Jessica Rohrick recently re-connected after their babies were both diagnosed with and treated for DDH at the Boston Children’s Hospital Child and Young Adult Hip Preservation Program.
Tosha’s daughter, Carmela, and Jessica’s daughter, Phallon, were treated with a Pavlik harness and are on a regular follow-up schedule with their pediatric orthopedic surgeons — Drs. Eduardo Novais and Travis Matheney.
The new parents offer advice for other parents whose babies are diagnosed with DDH. …
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.”
Genetic testing confirmed Bella did have Morquio, which meant she needed a slew of additional specialists — in clinical genetics, pulmonology, cardiology, neurology and more.
Kristina Peitzch jokes that with four daughters her family keeps the local dance school in business.
It started with Jessica, now 13.
Jessica fell in love with ballet when she was 3. A few years later, Danielle followed, then Madison and finally Abigail. Going to the studio on a nearly daily basis is a family affair.
But when Jessica was 9, she started experiencing mysterious ankle pain. Dancing felt a little less enjoyable.
“It was random at first and seemed to happen more with activities like gym class or ballet,” says Kristina. The pain would disappear for a few weeks, so Kristina attributed it to growing pains.
Over time, Jessica’s ankle pain became more frequent, and she would complain about it several times a week.
Kristina mentioned it to her daughter’s pediatrician, who ordered an x-ray of her ankle. It didn’t show an injury or fracture, so Kristina continued to treat Jessica’s ankle pain with an occasional Advil. …