Lyla and Quinn are identical twins living with Type I Osteogenesis Imperfecta. The first few years of their lives were riddled with fractures, and no doctor could determine the cause of the frequent breaks. After countless doctors, hospital visits, and broken bones, their mother took them to Johns Hopkins Hospital. At just three years old, Dr. Shapiro diagnosed them with Type I OI. This diagnosis only increased their hospital visits. Lyla began treatment right away due to her lower bone density, while it was not deemed immediately necessary for Quinn. Even with treatment, the fractures continued — at home, in school, and on vacation — and few people truly knew how to handle the situation.

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When Dr. Shapiro retired, the search for another doctor began again. After another year of searching, they discovered Shriners Hospital. For the past eight years, both girls have been receiving treatment and participating in clinical studies. They were ideal candidates because they share the same condition and genetics, but only one of them had initially received treatment.

Having just completed their final treatments at Shriners, Lyla and Quinn decided to do their own research and find a way to give back. A large portion of their lives has been shaped by their OI diagnosis. Understanding how it affects themselves and hundreds of thousands of others led to the creation of The OI Project — a platform to raise awareness, support research, and share their journey.

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OI has impacted many areas of their lives — from the sports they could play to the schools they attended — eventually leading them to an all-girls school. Now juniors in high school, they’re beginning to think about college and future careers.

 

Lyla, inspired by her experiences with OI, her interest in genetics, and her work as a volunteer EMT, hopes to pursue a career in surgical oncology.

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Quinn, while not pursuing medicine directly, is interested in the business side of healthcare. She is currently considering a future in finance or pharmaceutical marketing.