Harvard boy with heart defect gets dream man cave from Make-A-Wish

HARVARD – Nine-year-old Kodey Bentz had his first open-heart surgery when he was 6 months old and two more followed. Another looms on the horizon.

Kodey was born with a hypoplastic left heart, which is a chronic and life-threatening defect. Both of his heart ventricles are on the right side, which makes it a challenge for blood and oxygen to pump through his body. The Make-A-Wish Foundation of Illinois recently paid a visit to Kodey to grant him the ultimate, sports-themed "man cave" room remodel in the basement of his Harvard home

Born more than a month premature, the boy weighed only 4 pounds, 5 ounces at birth and only weighed 6 pounds for his first surgery. He likely will need another operation once he gets a little bigger. He lives with his mother, Jenny Grupe, and her husband, Jeremy Grupe.

Kodey loves sports, which is why he chose to wish for the room makeover, which was built in the partially unfinished basement and includes movie-theater seating, a flat-screen TV, video gaming systems and various paraphernalia and decorations centered around his favorite sports and players.

The most exciting part of the room is the PlayStation 3, Kodey said. Another benefit of the room is that he can use it for years to come.

“We talked about doing something like a trip, but a trip is only a week long, and then it’s over,” Jeremy Grupe said. “With this, he can enjoy it for years.”

More than 75 percent of Make-A-Wish kids request things that involve travel, said Jessica Miller, communications manager with the Illinois branch.

“We do grant some room re-decorations, but not a lot,” she said. “Sometimes it’s a bedroom or a playroom, and sometimes it’s something very cool like this man cave.”

More than 700 Illinois kids got their wishes last year. Kids are referred to the foundation through family or treating physicians – which was the case with Kodey. The agency got in touch with the family in 2015, and Kodey made his final request in March of this year. After that, it took a few months to complete the room. The family hung a curtain downstairs to make sure Kodey was surprised by the final outcome – and he swears he didn’t peek.

Jenny Grupe was a young, single mom when she gave birth to her son and the first few years were a struggle, she said. At just a week old, Kodey needed his first serious medical procedure, but he was so small that doctors had to reach his heart by going in through his back.

After his first open-heart procedure, the reality of the situation hit home, Jenny Grupe said.

“We were there for two months. It was touch and go,” she said. “That was when I knew it was a miracle, him being here. The next surgery he had, he was about a year [old] and the last procedure he was 2 1/2. So there was a good gap, but he had to get through each one to get better.”

After his first surgery, Grupe brought her baby home on oxygen, with more than a dozen different medications.

“For a good six months, it was doctor visits after doctors visits and medication every few hours,” she said. “It was a wake-up call.”

Kodey still takes medication, including a blood thinner that makes it dangerous for him to participate in the sports he loves. In April, he got hit in the eye with a baseball and a CT scan showed blood on his brain.

“It was definitely a scare,” Jenny Grupe said. “It really made me wake up and see that something so little like this could’ve been life-threatening.”

But she has gotten support along the way and said that the struggles have made her a better person. Grupe said she tries to stay positive, because Kodey is such a happy, giving, kindhearted kid.

“If it wasn’t for what he has been through, I don’t think I would be the person I am today,” she said. “It has taught me to be a patient person and to be grateful of what life has given me. ... I try to stay positive and be thankful for every day.”

If you know a child with a terminal or life-threatening illness, contact the foundation at illinois.wish.org.