For this week’s Kid Captain, life has become a waiting game to find out how a rare condition will affect him.

Maddox Smith, a 9-year-old from Coralville, was diagnosed with neurofibromatosis, or NF, when he was 5. The disease causes tumors to grow on nerve cells. His parents first noticed what looked like birthmarks on his body, and they soon discovered these spots were “café au lait” spots, a symptom of the rare genetic condition.

“We really had no idea what to expect or what his condition was. We hadn’t ever heard of it,” said Maddox’s father, Mike Smith. “We Googled it, which was kind of the wrong thing to do at the time.”

His treatment was simply to monitor his condition on a regular basis. The disease can cause learning disabilities, headaches, scoliosis, and numerous other conditions. But for the time, he just had the café au lait spots.

When Maddox was 7, he began to have violent headaches — so bad that he sometimes had to leave school early. His doctors ran an MRI and found a cavernoma — a brain tumor the size of a golf ball. Maddox’s doctors told his parents this is rarely ever seen in children, so an adult neurosurgeon had to remove the tumor.

After the surgery, Maddox lost 50 percent of his vision.

“It was one of those where the various specialists that we saw said they don’t know if [his vision would] ever come back or if it would get better. There was nothing they could do but wait,” Maddox’s mother Jen Smith said. “And quite gratefully, his vision came back.”

The entire tumor was removed, and his treatment has returned to simply regular monitoring. Time will tell how the disease will affect him for the rest of his life.

“Most of the other horrible things that could pop up come in puberty, and he’s just 9, so right now, so we’re just monitoring,” Jen Smith said. “It’s a whole lot of wait-and-see. He sees his NF doctors at least once a year to watch for tumor development, and they can happen on any nerve of [his] body. There are nerves literally everywhere on your body.”

For the most part though, Maddox is like any other kid his age.

“I like track, and I love cross-country. Also I like playing football and baseball, and I like to read a lot, and I play the guitar,” Maddox said.

Before the Iowa/Illinois game on Saturday, Maddox will step onto the field with the Hawkeye football team during the national anthem. He was selected for the Kid Captain program, which honors a pediatric patient undergoing treatment at the University of Iowa Stead Family Children’s Hospital at each football game.

Jen Smith said Maddox is excited about the game and is a “die-hard Hawkeye fan.”

“He’s mostly worried about what his face will look like on the Jumbotron,” Jen Smith said. “He’s like, ‘What will my face look like when it’s so big?’ ”

His favorite player is running back Akrum Wadley, who spent some time with Maddox this summer.

“I’ve literally been taking him to Hawkeye games since before he was 2,” Jen Smith said. “He watches the game and yells at the officials just like everyone else. He’s very engaged, he’s totally into it.”

Despite the whirlwind that Maddox’s life has been, the family has found comfort at the Children’s Hospital.