'It's a crisis that nobody knows about': Project Bubaloo seeks progress for children with congenital heart disease

MILWAUKEE (CBS 58) -- Callie Chiroff lost her son, Theo, to congenital heart disease (CHD) four years ago. His short life inspired her to launch a nonprofit called Project Bubaloo. In just a short amount of time, the organization has grown and is helping to raise awareness and funding for CHD.

"Thank you for coming," Chiroff greeted guests with hugs at a fundraiser in March.

She had been running around all afternoon to make sure everything was perfect. The beer was on ice and the food ready.

"Can you guys help out in coat check?" she asked a few volunteers.

She did a final walk-through of the event space at Coast in downtown Milwaukee.

"I'm sweating a little bit," Chiroff said with a laugh. "But really and truly, I have so much support and so much help that everything's been pretty easy."

The event, called Hops for Hearts, is a labor of love. All of the money raised goes to Project Bubaloo.

"That was his nickname. I don't know why, I just started calling him that," Chiroff explained.

Theo was born in September of 2017 with congenital heart disease.

"At my 20-week ultrasound, they told me something was wrong, and there was something wrong with his heart and he would need open heart surgery when he was born," Chiroff said.

Chiroff spent six months by Theo's side at Children's Wisconsin.

"As time went on, he had more complications and more complications," she explained. "And he, for six months, fought really hard."

Her baby, with his big brown eyes, talking to her, every day, in his own way.

"He had the biggest brown eyes you could possibly imagine, that just looked wise," she said. "He was talking to you through his eyes and he was so sick for so long."

Watching Theo fight, she made the decision no parent wants to make -- to withdraw care.

"Eventually, we just knew his life was not meant to be long, and he was telling me his life was not going to be long," Chiroff said.

With that decision, she took Theo outside for the very first time.

"I was able to take him outside and let the sunshine shine on his face, and that, for me, was saying goodbye to him," she said.

But Chiroff also made a pledge to Theo that day.

"I promised him that I was not going to waste my life, because he didn't get one," she said, tearing up.

Her sister, Katherine Jansen, was by Chiroff's side the entire time.

"When you have that passion for something, that's all you need," Jansen said about the decision to launch Project Bubaloo.

The nonprofit raises awareness and funds to fight CHD, which impacts one in 100 children.

"It's a crisis that nobody knows about, so that's why we're here, to tell people more about it," Jansen said.

Initially, the two didn't know much about running a nonprofit.

"I'll tell you a little secret. I think we just, we winged it," Chiroff said with a shoulder shrug. "I hate to say that, but it's one of those things where you want to do something and you just learn along the way. There's no handbook for it."

Passion for the cause drove them on.

"That's one of the things that Theo taught me, is follow your passion. After he passed away, I remember I was in a job that I wasn't happy in, I was looking for other jobs. Life is too short not to do what you're passionate about," Jansen said.

Now Jansen has a new calling, fighting for other families raising kids with CHD.

"I've never attended so many children's funerals since knowing people in the CHD community. And to me, that's just not okay," she said.

The sisters are getting the word out. Hundreds packed the Hops for Hearts event. It raised more than $60,000.

"You really don't realize how many good people are out there and people want to do good, too," Jansen said of the support they've gotten from the community.

It's a celebration of Theo's life and a legacy to carry on.

"We're so passionate about it, and it's something that means so much to us that it's not work. It's fun," Jansen said.

"I just want him to be proud, and I think, I think he is," Chiroff added. "We just want to keep making a difference."

For more information on Project Bubaloo and how you can help, click here.