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She got a heart transplant at 11. Then, her insurance declined to cover medication she says keeps her alive

With uncertainty swirling around her insurance coverage, an Ohio woman meets her organ donor's mom for first time
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CINCINNATI — Next to a framed picture of her son, Mary Cutter picks up a stuffed bear. Then, she pushes its paw.

Her smile is so big it's difficult to describe.

“Can you hear it?”

The stuffed animal is making a sound. It’s the sound of her son’s heartbeat. He died in 2012.

WATCH: A transplant recipient meets her donor’s mom for the first time

She got a new heart. Then, her insurance declined to cover transplant medication

At Gate of Heaven Cemetery, the sun is setting. Cutter's son is buried there.

Payton Herres hasn’t been in a while, but she knows exactly where to go. At the marker, Herres takes a picture.

And then she sends it to Cutter.

“I always wonder if he’s proud of me. I hope Mary is proud of me,” Herres said. “I don’t want to let them down.”

Herres was born with a rare congenital heart defect that required two surgeries before she turned 11. Neither worked.

“The doctors basically told my parents you need to start planning a funeral,” Herres said. “I was in really bad shape.”

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Payton Herres was born with a rare congenital heart defect that required multiple surgeries before turning 11. Then, she needed a transplant.

But when Cutter's son, Christian, died, his heart gave Herres a new shot at life.

All these years later, Herres and Cutter are about to meet for the first time. Sitting at her dining room table, Cutter wipes her eyes.

“I’ve been crying all day,” Cutter said.

Because to keep her heart beating, Herres tells me she needs a medication called everolimus — it helps stop her body from rejecting the transplant. And earlier this year, her insurance company refused to cover it.

They said it wasn’t medically necessary. But Herres tells me she would die without it.

“I almost ran out of pills,” Herres said.

Eventually, after months of denials and appeals, Herres’ insurance agreed to cover the medication. A spokeswoman for Anthem Blue Cross and Blue Shield said the company didn't consider Herres' previous treatment in its initial decision.

“We apologize for the frustration this caused her,” the spokeswoman said.

But even with the medication approved, Herres tells me the price increased dramatically. Something that almost puts her right back where she was when she was fighting with insurance in the first place.

Something that brings back all kinds of memories for Cutter.

"It’s like losing him again," Cutter said of her son. “It’s just not right."

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Mary Cutter's son died more than a decade ago. His heart was used to save a young girl's life. Now, Cutter says that girl's insurance battle makes it feel like she's losing her son all over again.

At her dining room table, Cutter looks through old photos of her son — playing football, hugging his dog, standing with her at the pool.

Outside, it’s dark now. Herres almost slips while walking up the driveway. She’s carrying a binder full of documents showing those battles with insurance.

Cutter waves.

“Give me a hug,” Cutter said. “You’re special to me."

It's why she offered to pay for the medication, even when insurance wouldn't.

“I just want her to be OK,” Cutter said. “For him, and for her.”

To view Herres' petition, click on this link.

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