ARTICLES RELATED TO:
OI Awareness

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 […]

When Viana first walked through the doors of Nemours Children’s Hospital, Delaware, she felt something she hadn’t in days: relief. Her son, Koa, had been diagnosed with osteogenesis imperfecta (OI), a rare genetic disorder often called “brittle bone disease.” Before Koa was even born, doctors warned Viana that his chances of survival were low. “Almost every doctor I saw just gave me the same answer, that he wouldn’t live,” she shared. But Viana believed in her baby – and found a team at Nemours Children’s who believed in him, too. Now one year old, Koa is doing more than surviving, he’s thriving. Thanks to specialized OI care, bone-strengthening medications, and the compassionate support of his OI team including medical care and orthopaedic care, Koa is living a full and joyful life. Though OI can be life-threatening, new research from Nemours Children’s is shedding light on a more hopeful future for […]

Laura, Jess, Ginny, and Jasmine are remarkable mothers whose paths crossed through their children’s diagnoses. Through shared experiences and care teams, this group of women have formed lasting friendships. Their children, Charlette, Noah, Gino, and Jeremiah, share the diagnosis of osteogenesis imperfecta (OI) and receive compassionate care from the exceptional team at Nemours Children’s Hospital, Delaware. Under the guidance of dedicated clinicians such as Dr. Ricki Carroll, Dr. Jeanne Franzone, Tina McGreal, APRN, Licensed Genetic Counselor Andrea Schelhaas, Sarah Little, PA-C, Katie Harp, LCSW, and many more, these children are thriving in a nurturing environment full of hope. United by a common journey, Laura, Jess, Ginny, and Jasmine were introduced to each other via an online group for parents of children with OI. Through these Facebook groups dedicated to OI, they discovered a community where fears were conquered, victories celebrated, and wisdom exchanged. Laura recalls the moment when she first […]

In the world of healthcare, finding a place that feels like home can be a challenge. For Amanda, mother of 4-year-old Mackenzie, that home is Nemours Children’s Hospital, Delaware. Mackenzie’s journey with osteogenesis imperfecta (OI) began even before she took her first breath. At just 25 weeks, Amanda learned of her daughter’s diagnosis. “I went for a routine anatomy scan while pregnant. Significant bowing in Mackenzie’s legs and long limb measurements indicated that she would need more testing. I received an amnio and was sent to another hospital where she was diagnosed,” Amanda recalls. Transitioning Mackenzie’s care to Nemours Children’s was a pivotal moment for their family. They discovered the facility after finding recommendations on social media. “We are part of a group on Facebook for parents of children with OI,” says Amanda. “I was asking questions when Mackenzie broke her arm at 10 days old and someone recommended we […]

Before he was even born, MJ Strickland was diagnosed with Osteogenesis Imperfecta Type IV Severe (OI), a disease causing symptoms such as easily broken bones. Growing up with OI, MJ hasn’t always had the best experiences with doctors, nurses, etc. When he saw them, MJ was usually scared and in pain. When the Stricklands were trying to find quality orthopedic care for MJ with someone that is experienced with OI, they found Dr. Stall at Nemours Children’s Hospital, Florida. When MJ began working with Dr. Stall and his team, everything changed. “MJ has a special place in his heart for his Nemours team,” say the Stricklands. “Obviously, Dr. Stall is his bestest buddy. I’ve never seen him be so chummy with any of his medical team like he is with him. You can tell that all of MJ’s caregivers at Nemours have a genuine interest and concern for him. They […]