Maya's Story

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Osteogenesis imperfecta

Maya Simbulon may be tiny, but her joyous smile and infectious laugh make her the focus of any room she's in. Maya has osteogenesis imperfecta (OI), a genetic disorder that makes her bones fragile and prone to breaks. At just 4 years old, Maya has endured 26 fractures--but she's never afraid to try new things. Watching her 19-month-old sister stand and run across the room, Maya works hard to pull herself up, too, knowing that one false move could bring another painful break.

For several years, Maya has come to Kennedy Krieger's Osteogenesis Imperfecta Clinic for treatment with a promising drug aimed at increasing her bone density and making fractures less frequent. Our  audiology department has also made sure that Maya receives screening for the hearing problems common in people with OI. OI is a complicated disorder that can affect a person's entire body; Maya already struggles with sleep apnea. But Maya has shown that she's brave enough to face OI and its challenges head on.

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