PITTSBURGH (KDKA) — The book is called “Bella’s Gift” — and the hero of the story is a little 6-year-old girl named Bella Santorum who doctors said was not going to live.

“Trisomy 18 is a genetic syndrome where a child is born with an extra 18th chromosome, and that leads to a lot of different health issues,” said Bella’s mother, Karen Santorum, appearing at a Friday taping of the KD/PG Sunday.

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“Of the children born alive in America, 10 percent make it to the first year,” added Bella’s dad, former U.S. Sen. Rick Santorum.

But it’s really the story of a couple — Karen & Rick Santorum – who, like many parents with special needs children, confront their own challenges.

Time management is one.

“With Bella there’s certain things you have to give up. You can’t go out and play golf for four hours. I’m home. That’s where I want to be,” said the former senator.

“My biggest challenge every day was not just attending to Bella’s needs, but taking care of all my children, making sure they had mom-time every day,” added Mrs. Santorum.

And the Santorums are honest about the strains on marriage.

“We wanted to be transparent. One of the reasons we wrote the chapters separately is because if we wanted to help parents, then we needed to be real. We needed to tell the real story about the conflicts we went through, where emotionally, spiritually we were,” said Santorum.

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“Moms and dads grieve very differently. And it doesn’t mean that one’s different than the other. You sort of kick in, and you have different roles to play,” said Karen Santorum.

“Rick was really busy, being strong for the family, taking care of the family. And I interpreted his peace in maybe the wrong way,” she noted. “What I do know is that the divorce rate is very high for parents of kids with disabilities.”

Santorum says his stoicism was a protection against losing another child, but that changed when Bella nearly died in 2012.

“I walked up and I’m looking at her, and she’s struggling. Put my finger there, and she grabbed it,” said the former senator. “And I just realized at that moment that I wasn’t going to be OK if she died. It wasn’t going to be easier. It would be harder because I hadn’t fully given her what I needed to give her.”

It’s easy to be cynical when a politician writes about family shortly before they are expected to run for president.

But this book is not political,

It really is a love story about a little girl, her parents, the medical community, and all of us.

To see more of Stacy Smith’s interview with the Santorums, watch the KD/PG Sunday Edition this Sunday at 11:30 a.m.

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