Kids with osteogenesis imperfecta know the slightest bump can cause a break, and when they come to Shriners Children’s they get to write their own stories of strength. Just ask Waseem, whose smile lights up the room as he towers over his father, Mostafa. “He is getting stronger and stronger,” Mostafa beams. “He is taller than me now!”
Children with osteogenesis imperfecta, commonly known as OI, or brittle bone disease, face unique challenges: fragile bones that break easily, potential bone deformities and associated complications like brittle teeth, spine curvature and hearing loss. While everyday childhood activities may pose risks, Shriners Children’s approach combines innovative research with compassionate, family centered care. Waseem, one of many Americans with this rare genetic condition, made treatment progress in 2023 when he accessed innovative DEXA Scan technology at Shriners Children’s Portland. This stateof- the-art bone density scanner isn’t just another machine — it’s a window into precision care.
“Having a machine to measure bone density here means we can directly monitor and treat his bones,” explained orthopedic surgeon Ellen M. Raney, M.D. The scanner is also the first in the area specifically calibrated for children. For Mostafa, this means something even more practical: all of Waseem’s care — from bloodwork to X-rays and infusions — happens in one visit. “It makes a huge difference,” Mostafa said.
A collaborative triumph
A younger Martin works with his physical therapist, Laura van Houtryve (left), and his physician Dr. Holly Leshikar, who he credits with transforming his life.
But perhaps no story better illustrates the triumph of spirit than Martin’s remarkable journey. Born with Type I OI, the most common form of the condition, Martin faced years of immobility and countless fractures that left his legs weak. His life transformed in 2017 when he met Holly Leshikar, M.D., at a Shriners Children’s Northern California outreach clinic in Mexico.
Dr. Leshikar, who also lives with OI Type I, brought more than surgical expertise to Martin’s case — she brought understanding. Using innovative custom implants, she performed complex surgeries to realign Martin’s femurs. Working alongside dedicated physical therapist Laura van Houtryve, PT, MPT, they formed what Laura calls “a triangle effect” — surgical precision, guided therapy and Martin’s determination.
The result? Martin walked independently for the first time in over six years. Now 18, he’s not only walking — he’s striding toward a nursing career, inspired by the care he received at Shriners Children’s.
When challenges become opportunities
Dylan is another patient whose story proves that brittle bones can lead to big dreams. Born with 32 broken bones, Dylan found hope at Shriners Children’s St. Louis. “I’ve broken nearly 100 bones throughout my life, and Shriners Children’s kept me alive during those times,” he reflected. Today, Dylan — known as “Ivar” on stage — commands attention as a sports announcer and alternative rock singer, starring in Discovery Channel’s Big Little Brawlers. Despite the challenges of OI, he’s become one of the most recognizable personalities in micro wrestling entertainment. “At the time, my mom was a single mother working three jobs, so it helped us to be able to go to a hospital that gave me the best possible care regardless of our family’s ability to pay,” Dylan shared.
Dylan transformed his challenge into an opportunity, using his voice and personality to inspire others. “The care I received gave me the confidence I have today to do the job I have now, performing in front of thousands of people each month,” he said. These success stories highlight what’s possible when advanced care and innovation meet compassion. Across the system, Shriners Children’s combines cutting-edge research with family centered treatment, helping children with OI manage their physical challenges while seeing what’s possible and helping them reach for their dreams.
Martin poses with physical therapist Laura van Houtryve on his 18th birthday. He has celebrated the occasion at Shriners Children’s Northern California every year since he was 11.
Harmonies of healing and hope
The spirit of possibility shone brightly at the Wishbone Day concert at Shriners Children’s Chicago last spring. Every May, people come together to celebrate Wishbone Day, an international awareness-raising day for OI. The most common surgical technique used today to treat OI was developed at Shriners Children’s Chicago.
Shriners Children’s orthopedic surgeon Peter Smith, M.D., is known internationally for his expertise in treating children with OI. Dr. Smith joined 50 guests for a special celebration. Joseph, a former Shriners Children’s Chicago patient and professional opera performer, conducted a heartwarming performance of Disney tunes, leading choirs and an orchestral ensemble from two local Catholic parishes where he works. The 30-minute concert demonstrated the same determination that patients such as Martin show. Joseph’s performance showed that with determination and the right support, those with OI can pursue their passions and inspire others.
Shriners Children’s offers more than treatment for families facing OI — it provides transformation. As Martin’s physical therapist, Laura, says, “It’s not just about healing bones. It’s about building futures, one step at a time.”
