For Latisha, osteogenesis imperfecta (OI) has always been a part of life. Diagnosed around age 6 after multiple leg fractures, she knew the challenges that came with the condition. When she became a mother, she was determined to find the best possible care for her children. That search let her to Nemours Children’s Hospital, Delaware – the same place she had come to trust for her own care.
Her children, Emerson and Lilly, were both diagnosed with Type 1 OI at birth. “Without the care from Dr. Franzone and the entire OI team, I’m not sure where my kids would be,” Latisha shared.
OI, commonly known as brittle bone disease, is a genetic disorder that prevents the body from building strong bones. For Emerson, those fractures started early – he broke his leg three times in just one year after learning to walk. Lilly also faced fractures within months of taking her first steps. That’s when Latisha and the Nemours Children’s team decided to start PAM infusions, a treatment designed to strengthen bones and reduce fractures.
Both children responded well to the treatment. Emerson completed his course between ages 3 and 5, and his fractures have become more under control. Lilly wrapped up her infusions in May 2024, and the team will continue to monitor their bone density to determine next steps.
Nemours orthopedics specialists, including, Dr. Franzone and Dr. Kruse, have been by their side every step of the way. Their experience treating rare conditions like OI ensures that each patient receives personalized, cutting-edge care.
Latisha describes the Nemours orthopedics team as nothing short of phenomenal. “They’re they only providers I trust with my children,” she says. “My favorite thing about them is that they always reassure my concerns.”
With the help of Nemours Children’s, Emerson and Lilly are thriving. Both are excited about participating in dance camp, and Emerson is looking forward to playing basketball. Their family continues to follow up with Nemours’ specialists, including OI spine care with Dr. Shah and discussions with Dr. Jain and Tina McGreal, NP-C of the Orthogenetics team about additional infusions.
Latisha’s advice to other parents navigating OI is to trust your instincts. “As OI parents, we know when something isn’t right,” she says. “If you think something is wrong, follow up with the team at Nemours. I could not ask for a better care team for my family.”
At Nemours Children’s Health, families like Emerson and Lilly’s are met with expertise, compassion, and unwavering support.
