Hometown: Hilliard, OH
Age on Race Day: 10
Diagnosis: Agenesis of the Corpus Callosum, Colpocephaly, Microcephaly
At 6 months old, Nora’s parents noticed she wasn’t meeting the typical developmental milestones for her age. She struggled to roll over, couldn’t move objects between her hands, and kept her right hand clenched in a fist. Concerned, they brought her to physical and occupational therapy at Nationwide Children’s Hospital, where she began working toward those early milestones. Nora also visited the neurology clinic to rule out any underlying conditions.
An MRI revealed that Nora is missing her corpus callosum, the structure that allows the two hemispheres of the brain to communicate, a diagnosis called agenesis of the corpus callosum (ACC). She was also diagnosed with microcephaly, meaning her head is smaller than average.
Both ACC and microcephaly have resulted in additional medical diagnoses over the years. Common health issues in children with ACC or microcephaly include an intellectual disability, feeding challenges, motor delays, seizures, and autism; all of which Nora has.
Nora’ parents weren’t sure if she would ever walk independently. After years of physical and occupational therapy and lots of determination, however, Nora is now walking and jumping independently, chasing after her big brother. She also maintains a healthy weight, with the support of her feeding tube.
“It is because of all of the support from Nora’ physical and occupational therapists, and her sheer determination to ‘be like her big brother’ that now, she runs down the sidewalk in front of our house,” shares Nora’s mom, Annie.
