Lionel’s Story: Thriving with Osteogenesis Imperfecta

A Legacy of Care Across Generations 

Lionel, a spirited 1-year-old from Sioux City, Iowa, shares a unique connection with our Osteogenesis Imperfecta (OI) Clinic — his father José also was a Children’s patient as a child for the same condition. Commonly known as “brittle bone disease,” OI causes bones to fracture easily due to a genetic disorder affecting collagen production. Thanks to Children’s legacy of advanced care, José was able to grow up with the support he needed. Now, Lionel is paving his own path under the watchful care of Children’s pediatric experts. 

What Sets Children’s Nebraska Apart? 

• Comprehensive, Multispecialty Teamwork: Lionel’s care includes specialists from Orthopedics, Genetics, Medical Management and more — a collaborative, multidisciplinary team that cares for the whole child.  

• Advanced Treatments and Technology: From leading-edge surgical techniques to medications that strengthen bone density, we ensure our patients have access to the most advanced care available.  

• Generations of Expertise: Children’s Nebraska has been a trusted destination for OI patients and families for decades, combining a history of innovation with heartfelt care. 

A Family's Journey of Hope 

Before Lionel was born, his family discovered his diagnosis at around seven months gestation during a visit to our Fetal Care Center. His mother, Mayah, reflects on the reassurance they felt knowing expert care was so close to home. "We came to Children’s right away, and it's been a comfort knowing Lionel has a place with the resources to help him thrive," she says. 

Lionel now visits our OI Clinic twice a year, receiving personalized treatments, ongoing monitoring and bi-monthly infusions at our Infusion Center. His care team is dedicated to supporting him every step of the way. 

Treatment at our clinic is holistic, addressing not just bone health but also the broader developmental and emotional needs of each child. Through advanced therapies and minimally invasive surgical techniques, Children’s Nebraska continues to lead in the care and research of OI. 

A Future Full of Promise 

Lionel’s story is a testament to the power of community, compassion and innovation. At Children’s Nebraska, we don’t just treat conditions — we uplift families, foster resilience and create brighter futures. Whether treating current patients or the next generation, our commitment to care runs deep.