URBANDALE, Iowa — Last year a family from Urbandale watched the Iowa wave from inside the hospital. This weekend, they will be on the sidelines leading it.

“We’re really excited. She grins really big whenever we talk about it, so she is so pumped,” said Heidi Larson.

The new school year brings a first for her feisty first grader Maggie.

“She’s feisty. She’s onery. When she’s done with you, she will let you know, either pretend to sleep or roll her eyes,” explained Larson.

Don’t expect any eye rolls this Saturday. The six-year-old is all smiles ahead of her Kid Captain duties for the Iowa game against Western Michigan.

Iowa City is the family’s home away from home. Once a week the Larsons make the road trip to the University of Iowa Stead Family Children’s Hospital. Maggie is living with a rare terminal disease known as MLD.

“MLD stands for metachromatic leukodystrophy,” said Dr. John Bernat, a medical geneticist at University of Iowa Stead Family Children’s Hospital.

The neurodegenerative disorder affects one in every 40,000 kids.

“A typical course like Maggie’s, you could have a normal development through the first 12 to 24 months but then gradual loss of motor skills,” said Bernat.

After her diagnosis three years ago, she began a clinical trial for experimental treatment to replace the enzyme she’s not able to make in her brain and body.

“We think it has given us a lot more time and a lot more, she gets to be Maggie longer. It hasn’t taken her away yet,” said Larson.

“She does show a lot of sass. I think we could say she’s 6 going on 16,” agreed Bernat.

Armed with her pom poms and Kid Captain jersey, Maggie and her family are ready to cheer on their favorite football team and team of doctors.

In case you’re wondering, Maggie chose “Roar” by Katy Perry as her song for the Iowa wave.  She is one of 12 kids who will be honored at Iowa home football games as Kid Captains.