With her larger-than-life personality, Annie, 6, has always had an unbreakable spirit despite her medical conditions.
At her mom’s 5-month ultra sound, Annie’s arms and legs were measuring smaller than a typical baby. Specialists thought she may have achondroplasia (dwarfism), but genetic testing and additional scans revealed more concerns. Doctors detected healing breaks in her tiny frame that were likely caused by osteogenesis imperfecta (OI), a genetic condition that causes extremely fragile bones.
Annie was resilient, and was carefully delivered via C-section as a full-term baby. While Annie spent a week in a local hospital’s neonatal intensive care unit to monitor her condition, her mom searched for a specialty clinic to care for Annie’s ongoing needs.
“When I called the OI Clinic at Akron Children’s, the lady who answered the phone said her name was also Annie and she, too, had a form of dwarfism,” said Sara, Annie’s mom. “I thought what a coincidence, maybe this is a sign, so I made an appointment with Drs. Robinson and Wiener. As soon as we met them, I knew we were in the right place.”
While there’s no cure for OI, the physician team put together a plan for physical and medical therapies to help maximize Annie’s potential.
In addition to physical therapy, at age 1, Annie started infusion treatments to help strengthen her bones. Today, she visits the OI Clinic annually to monitor her condition and continues with infusion treatments every 4 months. Each infusion lasts 4 to 5 hours and is given 3 days in a row.
“The first few infusions were very difficult, but the staff was amazing and didn’t give up on her. We all learned how to do it together over time and now she loves her infusion nurses,” added Sara.
“We will gladly make the 1-and-a-half hour drive from our home to Akron Children’s if she has a bad break or needs help,” said Sara. “Akron Children’s staff knows Annie and is specifically trained to help her – from the radiology techs to the Infusion Center nurses and everyone in between. Children’s is where we need to be for Annie’s care.”
When she’s not busy strengthening her frame and muscles through water physical therapy or infusion treatments, Annie loves playing outside with her older brothers, who encourage her to try new things like baseball and basketball. Annie also enjoys caring for her bunny, Mr. Hoppers, being active with 4-H and socializing, especially when talking about her little sister, April.