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."
Chandra – Trailblazing Bone Marrow Donation
Like her mother, Chandra spent a significant amount of time, sometimes years, undergoing treatment for OI at the hospital. She was a patient at the former Shriners Children’s hospital location, also in Spokane, and was one of the first patients at the present-day hospital. During that time, she developed a deep connection with her healthcare team. “The staff was like family to me,” she remarked.
Chandra incurred more than 200 fractures in her early and teen years, and only began walking on her own at the age of 22.
Despite a challenging childhood with intense treatments, Chandra provided a gift that would later ease OI treatment for her future son and many other patients with OI. She donated her bone marrow to be used in a genetic study. The results contributed to the OI protocols and treatment now used all over the world, and are considered the standard of care.
As a mom, she feels proud to have played a part in the treatment of her son, Alex.
Alex – Fourth Generation Shriners Children’s Family
Alex is the fourth generation in his family to receive care from Shriner Children’s Spokane. Alex receives regular pamidronate infusions, derived from his mother’s bone marrow donation, to treat his OI.
“When Alex started walking between 1 and 2 years old, I was shocked,” said Chandra. “The fact he was able to walk, even run, and knowing I had a part to do with that, makes my heart happy.”
Without treatment, Alex's family believes he would be living at the hospital with hundreds of broken bones. “Shriners is amazing with him,” she added. “I love Shriners so much.”
Today, Alex is a thriving teenager with his sights set on college. He has dreams of learning to drive and becoming a sports broadcaster. Despite the challenges he faces, Alex is a happy and determined young man.
What Can Families Learn from Chandra and Alex's Story?
For families who are just starting their journey with OI, Chandra and Alex recommend advocating for your child and working closely with your healthcare providers.
The family has a deep appreciation for the care they received from Shriners Children’s Spokane. “Everyone at Shriners is friendly and caring, and they want what’s best for your kiddo,” said Chandra. “We love our Shriners family.”
Chandra believes the Shriners Children’s Spokane doctors are the best in their field and has nothing but praise for the hospital and its staff.
OI is a challenging condition, but with the right support, patients can thrive and live fulfilling lives.
