Vivian
Hometown: Lewis Center, OH
Diagnosis: Jordan’s Syndrome
Age on Race Day: 10
When Vivian began missing her developmental milestones, her parents began a long and difficult search for answers. After three years of searching, Vivian participated in a genetic test known as whole exome sequencing (WES) that finally found an answer. Vivian had a genetic variation that resulted in a neurodevelopmental disorder known as Jordan’s syndrome. Jordan’s syndrome is characterized by macrocephaly, hypotonia, and global developmental delay. Vivian was the 40th person ever diagnosed worldwide, and at the time, the only person in Ohio.
Even before her official diagnosis, Nationwide Children's Hospital had been caring for Vivian.
“Nationwide Children’s Hospital has been there every step of the way,” says Vivian’s mother, Stacy. “Not only have we met such caring, hardworking therapists, but have also connected with other special needs families.”
Those connections lead to Vivian’s participation in the first ever clinical trial for Jordan’s syndrome. She is just one of 30 eligible participants.
When not participating in or fundraising for Jordan’s Syndrome research, Vivian has multiple, weekly therapies she has received since birth. This past year, however, she graduated from physical therapy, making 2024 the first year ever she was not in formal physical therapy. She is very much enjoying the new free time.
Now 10, Vivian can be found spending that free time singing, dancing, playing with her little sister Brooklyn, and spreading awareness for this rare genetic variation.
Marathon participants should expect a big smile and wave when passing through Vivian’s mile.
