When Carrie Benyo’s femur broke at just eight weeks old, her family wasn’t surprised. Osteogenesis Imperfecta (OI) ran in their family, and Carrie quickly became familiar with the challenges that came with it—multiple fractures and the need for specialized care. So when her daughter, Vaeda, was born, Carrie didn’t wait for the first fracture to seek answers. Through cord blood testing at birth, Vaeda was diagnosed with OI Type 1 when the results came back just four weeks later.
Determined to find the best care for her daughter, Carrie discovered Nemours Children’s Hospital, Delaware, a nationally recognized leader in OI treatment. “I wanted the best specialists I could find for her,” shares Carrie. What started as a search for Vaeda’s care soon became a turning point for Carrie, too. “When they said they could treat me too I started seeing them as well. Before that I did not have routine OI care, just treated fractures as they came.”
OI is a genetic disorder that prevents the body from building strong bones, meaning bones are more prone to fractures – even with minimal trauma. However, the effects of OI go beyond broken bones. Many patients with OI experience micro-fractures, which can lead to long-term bone bending, mobility challenges, and conditions like scoliosis. Because of this, ongoing specialized care is essential.
At Nemours Children’s, Vaeda and Carrie see Dr. Franzone, Dr. Shah, and Dr. Jain, specialists who understand the complexities of OI and provide expert, individualized care. From the OI Clinic to the Fracture Clinic, the team takes a proactive approach, helping manage symptoms, strengthen bones, and support long-term mobility.
“Everyone we have seen at Nemours—specialists, ER staff, X-ray and lab techs—have been so amazing,” Carrie says. “They are well-educated in OI, they listen to us, and they believe our symptoms. I love that they do not label us as incapable or weak. They believe in what we CAN do.”
This kind of understanding and expertise makes all the difference. Today, both Carrie and Vaeda have a dedicated care team looking after their long-term health. One thing that makes the Nemours OI Program unique is its commitment to provide a smooth transition of care into young adulthood. For parents like Carrie, that continuity brings peace of mind. She knows that as Vaeda grows, she’ll continue receiving expert care tailored to her needs.
With ongoing treatment, Carrie and Vaeda are focused on living happy, strong lives while keeping up with their routine OI care. Vaeda’s next annual OI clinic visit in May will include X-rays, blood work, physical therapy evaluations, and orthopedic assessments to track her progress. Carrie is also preparing for scoliosis surgery with Dr. Shah in June—an important step toward improving her quality of life.
Carrie’s advice to other families navigating an OI diagnosis? “Definitely go to Nemours for OI care. They will take care of you and give you the best quality of life you will find. They are the best OI providers I have seen—and trust me, I’ve seen a lot in my day!” What started as a search for her daughter’s care turned into a life-changing experience for both Carrie and Vaeda. With Nemours’ expert orthopedics team by their side, the Benyo Family is embracing the future with confidence—ready to take on whatever comes next.
