Ft. Wright baby fights for life and new heart

Family wins second chance for child

CINCINNATI - Milosh Kalapasez is a fighter.

"He was named after my grandfather," says Milosh's father, Ned. "He was a strong character. When Milosh came out with so many problems, we gave him a strong name, so he could live up to it and follow through and he has so far."

Milosh has fought to stay alive ever since he was born almost 15 months ago with an enlarged heart and a rare metabolic disease called Barth Syndrome.

His mother, Brie Chandler-Kalapasev, says, "He can hear us. He knows what we're asking and he's working as hard as he can to heal."

Milosh comes from a family of fighters.

Ever since his frightening birth, Ned says there were some scary moments.

"He flatlined and turned blue. They pushed me to the side, and brought him back, luckily."

Since then Ned and Brie have upended their lives, tag-teaming between Milosh at Cincinnati Children's Hospital, and 5-year-old Bella at home in Ft. Wright.

When I visited their home, Ned was making oatmeal for Bella, who was demonstrating her dance moves.

Brie says Ned spends every night at the hospital. He's there for morning rounds. She arrives at the hospital at 10 or 11 a.m. and stays until 6 or 8 p.m.

"It's tough. Really tough. Bella's five years old and very attached to us," says Ned.

And it takes more than two parents to make it work.

Ned says it takes a village. Friends who bring food, relatives, and Ned's co-workers at the Northern Kentucky Health Department who donated sick leave, so he can be at the hospital.

"What makes us want to be there is number one, he's our son and we can't let him go. He's so precious and awesome, and second, his having Barth Syndrome, it's tricky, there's no data."

There are fewer than 150 diagnosed cases of Barth Syndrome worldwide. The Kalapasevs have become experts on it, even a resource for doctors.

Milosh lived at home for eight months last year with his sister, his parents and their pets. Ned says he smiled all the time.

I said to Ned, "It sounds like he has a great spirit."

"A great spirit. And between him and his sister, a super special relationship. She can get him to laugh like nobody can."

But when his heart started to fail in December, it became clear that Milosh needed a new heart...and a heart donor.

"Kids can only get kids' organs. It has to be a size match, which means that someone else is going through a really bad time in life, losing a child. And to have enough strength to see past the grief,and realize that this is needed, so that somebody could live," explained Ned.

Milosh went on the heart transplant waiting list in March, but he needed interim help to stay alive. Doctors employed a Berlin heart to keep Milosh's heart pumping.

Dr. John Jefferies, Director of Heart Transplantation at Cincinnati Children's, says, "Milosh had two of these devices, one to support the right side of his heart, and one to support the left side."

On April 4, the call came.

Ned took the call and heard these words: "We have a perfect heart."

"What did you do?,"I asked. "Did you laugh? Did you cry?"

"I ran in to Brie and said, we have a heart and Brie started crying."

April 5 was Milosh's special day.

The day he had fought for. The day another family gave him.

"To have a family so strong and brave in their worst time," says Ned. "To have the power to say yes to organ donation, we pray for them all the time."

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The Kalapasevs wanted to share their story because they hope other families will consider organ donation. If you'd like to register as an organ donor, visit the Life Center Organ Donation Network at http://lifepassiton.org/ .

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