Natalie's Everyday Heroes: Milwaukee brewery raising money for rare diseases

 

MILWAUKEE (CBS 58) -- A Milwaukee brewery has launched a limited-edition beer to raise money for an important cause.

That is not a rare thing here in the brew city, but how the beer is helping is unique.

Jonathan Kowalske is fighting rare diseases -- inspired by his son, Mac.

Canning day is an exciting one at Component Brewing.

"I got a full case here," Kowalske calls out, placing the last can.

They're canning the brewery's limited-edition Zebra Hop IPA.

"We like our hoppy beers here," Kowalske said.

Kowalske doesn't expect this beer to last long.

"That one snuck up on me," he laughed, grabbing a can.

So, you could call these rare cases, and for Kowalske, the beer is inspired by a completely different kind of rare case.

"It's my two worlds combined together," he said.

His son, Mac, is 6. But he'll tell you something different, if you ask.

"I'm 100," Mac insisted. 

He's a little boy who loves hockey. His team, the Shaw Pirates, have their flag hanging in the brewery.

"He asks every day, 'do I get to play hockey today?'" Kowalske laughed.

Kowalske loves to see him excel.

"Umm, he's doing great, as you can see," he said as Mac had his run of the brewery.

But the first 18 months of Mac's life were a series of questions.

"When he was born, the doctors looked at his head and thought it might be a little larger than normal," Kowalske explained. "My wife had very good mom intuition and thought there was more to it."

Doctors found fluid wasn't draining out of his head.

"He needed up having three surgeries, and now he has a shunt in his head with a straw that goes down to his abdomen, so it will relieve the pressure in his head and excess spinal fluid will get absorbed into his body," Kowalske said.

The surgeries and genetic testing led to a diagnosis -- a gene duplication called Malan Syndrome.

"Along with Malan Syndrome comes physical and intellectual disability," Kowalske said.

Fewer than 300 people in the world are known to have it.

But Kowalske discovered something as he learned more about rare diseases.

"Rare diseases aren't actually rare," he said. "Each individual rare disease is rare, but there are so many of them. That having a rare disease is not that rare."

One in 10 people have one. And that's what Zebra Hop is for. The zebra on the label is the official animal of people with rare diseases. The pogo stick is a strand of DNA and he's wearing Mac's glasses.

"It's all very cohesive to me," Kowalske said.

Mac will be cheering on his dad.

"Let's go, beer," he chanted.

Kowalske knows rare diseases are not a common topic.

"You don't really think about it until you're exposed to it or thrown into it," he said.

The beer launched Feb. 29, which was Rare Disease Day.

There are also 18 other breweries in the area who've signed on to sell Zebra Hop, too.

"The response was great, and I got a lot of breweries to join on and I'm very grateful for everybody that did it," he said.

It'll raise money for the National Organization for Rare Disorders, or NORD.

And Kowalske hopes it will start a conversation, too.

"Oh, Zebra Hop. That's interesting. What's that about?" he said. "And I'm glad I have the platform to be able to create a beer like this."

For more information on where you can buy Zebra Hop, click here. 

For more information on NORD, click here. 

If you'd like to nominate an Everyday Hero, send Natalie a message at [email protected].