A Family’s Journey with Osteogenesis Imperfecta

Commonly referred to as “brittle bone disease," osteogenesis imperfecta (OI) is a rare genetic disorder that affects the bones, causing them to break easily and possibly causing deformities.

Shriners Children’s is on the leading edge of osteogenesis imperfecta research and is actively working towards innovative treatment options to help children with OI. In the case of one family, OI is a part of their history that spans four generations. It also includes decades of care and treatment at Shriners Children’s Spokane.

June – One of the First Shriners Children’s Spokane Patients with OI

June, the matriarch of the family, was one of the first patients with OI at Shriners Children’s Spokane. Born in 1924, doctors did not diagnose June with OI until she was close to her teenage years. Initially, she was only considered to be of short stature. However, family members became concerned when she started to fracture her bones around the age of 10, which eventually led to her diagnosis. Despite living with OI, family members say she lived a long life and would have turned 99 in 2023.

Wanda – Multiple Surgeries from a Young Age

Doctors were able to diagnose June’s daughter, Wanda, with OI before she was born. She underwent multiple surgeries at Shriners Children’s Spokane from a young age and was no stranger to the hospital. Born in 1955, she spent a significant amount of her childhood in the inpatient unit. She recalled her siblings lining up outside of her hospital window to wave to her while she recovered. Despite the challenges she faced, Wanda persevered and had a daughter of her own, Chandra."