Madison Williams is a people person. The 9-year-old is involved in Girls Scouts, enjoys singing and dancing, and loves to give hugs.

So, when her parents Stephanie and Kevin Williams told her she was going to be a Kid Captain, Madison was ecstatic. Stephanie said she tried nominating Madison for two years before she was chosen in 2019. Because of the COVID-19 pandemic, however, her Kid Captain selection was postponed until this year.

“She was super excited when we told her,” Stephanie said. “She was jumping up and down, and her face instantly lit up as soon as we shared the news.”

While Madison won’t step into Kinnick on Saturday because the Hawkeyes are playing Wisconsin in Madison this week, the Williams family is planning to have a tailgate at their house with family and friends.

Outside of cheering on the Hawkeyes, some of Madison’s favorite activities are selling Girl Scout cookies and participating in the Miss Amazing Pageant — a national program for women and girls with disabilities.

Madison does these activities with a smile on her face despite her health challenges.

Madison had multiple health concerns when she was born five weeks early in Des Moines. She was born with Oculo Auriculo Frontonasal Syndrome — a rare congenital malformation. This has caused multiple face anomalies, including cleft lip and palate, deformed nostrils, and malformed eyes.

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The day after Madison was born, she was transferred to the University of Iowa Stead Family Children’s Hospital because the doctors believed that’s where she would receive the best care. She had to stay in the neonatal intensive care unit for more than three months. Madison received a gastronomy tube for feeding and a tracheostomy to aid her breathing. She was finally able to return home after five months.

When Madison was three years old, she was the first patient at the hospital to have vertical expandable prosthetic titanium rib rods implanted in her back.  Stuart L. Weinstein, the Ignacio V. Ponseti Chair and professor of orthopedic surgery, is Madison’s orthopedic surgeon. He said that it was a life-saving procedure. Weinstein, who practices taking care of children with spinal deformities, said Madison has such an unusual deformity that the usual implants and surgeries wouldn’t aid her situation.

Before the surgery, Weinsten said that her chest couldn’t grow, which didn’t allow her lungs to grow, either.

“This device, called the veptr, had been developed a number of years before, specifically for children like Madison,” Weinstein said. “And she was the first person that I thought of in my years of practice would only benefit from this particular implant.”

The rods in her back help straighten her back and separate her ribs so they can grow as she does. Weinstein said Madison has to return to the UI Stead Family Hospital a couple times a year to check on the rods. Most of the time, it is to enlarge the rod as she grows. Madison has also received completely new rods.

Since the implementation, Madison has had to have seven other surgeries. Weinstein said that the final step — whether her surgical team decides to leave the device in or take it out — will not be made until she stops growing.

Stephanie said the rods have impacted her for the better and doesn’t think her health would be where it is today without it. With this surgery, Madison can do things such as run and play with her friends without feeling terribly winded.  While Madison is growing, she wants to leave the rods in as long as possible.

Stephanie has a lot of gratitude toward the UI Stead Family Children’s Hospital, because Madison and her family would not be in the spot today without the treatment she received.

Weinsten, who has known Madison since she was 36 days old, was thrilled when he found out that Madison would be a Kid Captain. He said she is an inspiration.

“I hope Madison is an inspiration for other kids who really don’t have any problems, to look at someone like Madison who has to overcome problems every single day and what a positive attitude she brings to the difficulties life begins for her,” Weinstein said.