‘One day at a time’ for Hawkeye kid captain

JESUP - She thought her firstborn son, her beautiful two-year-old boy, had cancer.

In some respects, she hoped he had cancer.

'Because, OK, it's cancer, but at least there's the possibility of things like surgery and chemo - there's treatment with it,” Erika Havlik said.

Instead, in February 2015, a University of Iowa physician told Erika and her husband, Jesse, that Reed was one of just 200 people in the world with leukodystrophy. He's the only one in Iowa known to have the terminal genetic disorder.

'It was pretty ugly - there was a lot of ugly crying,” Erika Havlik said. 'It was just shock.”

Commonly known as 'vanishing white matter disease,” it does just that. It's eroding the white matter in Reed's brain at a rate that's anybody's guess.

'They usually say life expectancy is five to 10 years, and some kids progress a lot quicker and some progress a lot slower,” Havlik said. 'I would say that right now, his progression has been fairly stable to on the slower side. But we just don't know because it's just so rare.”

What does seem to be sure, Havlik said, is that the disease is terminal. As it progresses, doctors expect Reed to lose the use of his hands, the ability to eat, to hear, to speak, to see.

'As they described it, each piece they said got worse and worse,” Havlik said. 'By the end of the conversation, it finally hits you that he's going to die.”

And, she said, when you're told your child has an incurable genetic disease, you feel hopeless.

'You feel like you have zero control,” Havlik said. 'I feel lost a lot of times. I've felt jealousy …

when you see other kids doing normal things and you just so badly desire that for your own child.

'You have to learn to have a new normal in life.”

That new normal for the Havliks includes fear, fury and forced patience, but also gratitude.

'Reed's diagnosis has taught us to appreciate the moment, to be a family …

and make sure we spend as much time together as we can, because we don't know what tomorrow is going to bring,” Havlik said.

And today, at age 4, Reed is doing great.

'You would look at him and wouldn't think anything is wrong with him,” Havlik said. 'If he's just sitting there playing (with) toys or something, he's normal-functioning. He crawls to get around. He's very happy. He's still pretty mobile.”

While's he's doing so well, his family is determined to fuel his joy. And the Hawkeyes bring joy.

Havlik last year submitted an application for the UI Kids Captain program, an initiative in its eighth year that partners the Hawkeye football program with the UI Stead Family Children's Hospital to celebrate pediatric patients.

After Reed was chosen to be a 2016 captain, he participated in August in the annual Kids Day at Kinnick Stadium.

'And he's definitely become a bigger Hawkeye fan,” Havlik said. 'We'll watch the games now, and he'll say, ‘Where's my buddy at?' He calls CJ (Beathard) his buddy because CJ held him at the Kids Day event for the group picture, so he thinks they're big buddies now.”

Shortly after landing a spot among the 2016 kid captains, Havlik said they learned Reed would be the bowl game honoree. Although captains are assigned to every Hawkeye matchup, not all away captains attend their respective games.

But Reed's is the Outback Bowl in Tampa, Fla. - which also happens to be near a certain Magic Kingdom. In addition to Beathard and the Hawkeyes, Reed's a big Mickey Mouse fan.

'He was Mickey Mouse for Halloween, so he's excited to meet Mickey Mouse,” his mom said.

The family is staying at the Walt Disney World Resort in Orlando, where they plan to extend their trip after bowl game festivities.

Because they're entirely focused on the gift of right now.

'We have to live one day at a time,” Havlik said.

l Comments: (319) 339-3158; vanessa.miller@thegazette.com