Though she only started walking a few months ago, 9-year-old Aniyla is catching up very quickly to others her age.
Aniyla has a rare bone disease called osteogensis imperfecta (OI); she was born with 12 fractures and has been a patient at Shriners Hospitals for Children — St. Louis for most of her life. Patients with OI can be severely limited by the possibility of their bones breaking even with limited activity. OI is commonly referred to as brittle bone disease and it can vary greatly in severity.
When Aniyla came for her first appointment, she met with Mark Miller, M.D. He told Aniyla and her family that he could straighten her legs, but he was not sure she would ever walk.
In 2016, Aniyla underwent surgeries to place rods in the femur and tibia of each leg. Despite the original prognosis, Aniyla started physical therapy and quickly began learning to walk! Her physical therapist Erica says her progress is miraculous, adding, “She has come so far. I don’t think anyone would have ever guessed she would be where she is today.”
To a fourth grader, all of this could seem overwhelming, but not to Aniyla. “I wasn’t scared at all of walking,” Aniyla said. When she first started walking, she had to wear braces up to her hips, but has since advanced to ankle/foot orthotics (AFOs). Her weekly physical therapy activities include walking, catching and throwing a beach ball, and other motion-based exercises. “She works so hard and always with a smile on her face,” Erica says.
Since Aniyla has OI, her bones can easily break. She has been fitted with a special walker and wheelchair specialized for her needs. Her walker allows her to navigate while resting her forearms and now, she can even walk through the halls of her school, all by herself!