The second time’s a charm for Millie Judge. The Judge family applied for their eldest daughter to be an Iowa football Kid Captain when Millie was 7 years old, but ultimately weren’t selected. Two years later, they tried again, and when Millie’s father, Joe, received the news at the end of his workday, he immediately dialed his wife, Betsy, whose excitement left a lasting impression.

“I do remember my ear ringing after I told Betsy,” Joe said. “It might’ve been a little loud.” 

While the Judge family is thankful for Millie receiving a spotlight as Kid Captain for Iowa’s game against Nebraska on Nov. 28, they are more grateful for their daughter’s progress while facing a rare syndrome called Bannayan–Riley–Ruvalcaba. Millie turned 10 on Sunday, a milestone her parents said they were never sure she would reach.

Whether it was holding her head up on her own, walking down her gravel driveway, or talking with her classmates at school, Millie has continued to grow under the care of her parents and the University of Iowa’s Stead Family Children’s Hospital.

“Those are all things that we never knew the answer to, and now you can see she’s thriving,” Joe said. 

Millie’s medical journey began shortly after birth when she struggled to breathe. She had open-heart surgery and a colonoscopy before she turned one. When her parents found out about her diagnosis, which Joe remembered as not even comprehending at the time because of its rarity.

Bannayan–Riley–Ruvalcaba is a genetic condition that involves a missing 10th chromosome in the PTen gene sequence. This factor, known as PTen deletion, leads to various health complications, such as low muscle tone and intestinal polyps. Until her colon removal over the summer, Millie underwent several colonoscopies a year to treat the polyps.

“What it means is that we take it every day at a time, and Millie’s going to live the best life possible,” Joe said. “And that’s the way we’ve approached life.”

Millie’s diagnosis altered the day-to-day life of her family. Betsy left her full-time job at Iowa, and in 2019, the family moved from Albia to Des Moines to be closer to Iowa City for care. Betsy said the Stead Family Hospital has become a “home away from home” for the family, not only because of the time spent there, but also for the compassion the staff provides. Whether it was bingo or other activities, the Judges felt welcomed and bonded with one another.

“We’ve really become a close family,” Betsy said. “We spend a lot of time in a hospital room. We’ve really learned to get along. Play games, watch movies, it’s brought our family closer.”

However, the Judges still had to come to terms with the reality of Millie’s condition. Joe said they had to have a conversation no parent ever wants to have: debating between the quantity and quality of life. As Millie grew up, Joe and Betsy witnessed both quality and quantity of life increasing for their daughter, one moment at a time.

For instance, watching a young girl help Millie walk around a tennis court at a meet Joe coached. Or in preschool, when Millie hit the dance floor with her classmates at a party, an image Joe and Betsy treasure.

Leading up to last summer, Millie’s parents knew the colon removal was inevitable. Joe said it’s always a scary thought to have an organ removed, but considering polyps’ digestive issues and their links to cancer, the surgery had to happen.

After surgery, Millie’s general health has improved. She no longer needs her weekly injections to combat protein loss and can travel outside her house and hospital for longer periods of time. Millie now wears a colostomy bag and while it’s an adjustment, she said the change is for the better.

In her free time, Millie loves to read, draw, and spend time with her friends. She enjoys video games like Minecraft and Roblox, and while she wishes for a phone, her parents aren’t quite ready for that moment.

While the Judges won’t be in Lincoln for Iowa’s game, they will hold a watch party at Big Grove Brewery in Des Moines, where the Iowa alumni band will perform, celebrating Millie’s journey, one she’s embraced with a smile.

“For a while, we would feel this improvement and then take two steps back,” Betsy said. “So it was frustrating, but she was always positive, positive throughout all of it.”