Bella was born with a rare genetic disorder called Joubert syndrome. At the time of her diagnosis, Bella was one of 109 cases in the world. Of those 109, four were being treated at Nationwide Children’s Hospital so Bella and her family made the decision to move from Michigan to Columbus for care.  

Joubert syndrome causes a malformed brain stem and the absence or underdevelopment of the area of the brain that controls balance and coordination. Bella underwent many brain surgeries, procedures, and testing to manage this diagnosis. She also faced setbacks, like a brain shunt failure that left her with vision loss. Though she faced challenges, Bella and her care team successfully managed her diagnosis for years. 

At 13, however, things changed when, unrelated to Joubert syndrome, Bella developed ulcerative colitis, an inflammatory bowel disease causing inflammation and ulcers on the large intestine.  

“Ulcerative colitis ruled her life 100 times more than the Joubert syndrome,” shares Bella’s mom, Balinda. “It ruled everything that she did due to the amount of pain she was in.” 

Last summer, Bella underwent surgery to remove part of her colon and install an ostomy bag. Since then, Bella is able to rule her own life once again.  

“She loves her bag, she loves that it took away the pain,” Balinda says. Though Bella still faces some arthritis in her joints as a result of the ulcerative colitis, her motorized power-chair offers dynamic movement that helps with the joint pain and allows her to be independent. “She’s definitely out there living more,” says Balinda. “She’s much more active and social.” Bella’s chair has even allowed her to experiment with dying her hair, now able to get up to the salon bowl, a task she thoroughly enjoys.