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Kevin Cullen

A miracle story that needs just one more

Shohreh Moldenhauer and her son, Robert, at Children’s Hospital.

Kevin Cullen/Globe Staff

Shohreh Moldenhauer and her son, Robert, at Children’s Hospital.

If your kid is sick, if your child is dying, you believe in miracles.

Shohreh Moldenhauer believes in miracles. She and her husband, Bob, have just one child, a son named Robert. Two weeks after he was born, 14 years ago, Robert underwent a heart transplant.

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The good news was that he lived; the bad news was that the antirejection drugs eventually ruined his kidneys. In June 2011, the Moldenhauers were told that Robert needed a new heart and new kidneys.

They live in Wisconsin and their first stop was at a hospital in Milwaukee. The doctors there said there was nothing they could do. They went to a hospital in New York and got the same answer. A hospital in California raised their hopes, only to dash them three weeks later. They went to Columbus, Ohio. They went to Chicago. The Moldenhauers criss-crossed the country and when they were done eight different hospitals had said the same thing: they were sorry, there was nothing they could do. It was time to let Robert go.

But Shohreh Moldenhauer believes in miracles. “He’s my only child. I am not going to give up. I am not going to let him die,” she says. “No mother would give up.”

Her husband works in information technology and she asked him to create a Facebook page, explaining their plight. Just put it out there. See what happens. This was last February and the Facebook page had barely gone up when the Moldenhauers got a message from a woman in Florida named Teena Young. She asked them if they had tried Children’s Hospital in Boston.

“It never occurred to us,” Shohreh Moldenhauer said.

Young sent a message to Children’s Hospital, and not long after someone from Children’s sent a Facebook message to the Moldenhauers with an invitation that sounded like that song: Please come to Boston.

“We were sitting on the plane, waiting to take off for Boston, and one of our cellphones rang,” Shohreh Moldenhauer said. “It was our insurance company. They said, ‘Don’t go. It’s not covered. We’re not paying for this.’ ”

It was an absurd moment. A bean counter telling parents of a dying boy to abandon their only chance at saving his life. A few hours later, the Moldenhauers were in Boston. They met with a cadre of doctors, one of whom told them, “We can’t save his kidneys, but we can save his life.”

That, Shohreh Moldenhauer says, was the first miracle. They finally had hope. Robert began dialysis at Children’s in April, and the family took up residence in Boston, staying at the Yawkey Family Inn, a few blocks away from the hospital. Bob Moldenhauer has been juggling his job in Wisconsin and his son’s medical care in Massachusetts.

The second miracle came in August. Bob and Shohreh Moldenhauer needed a break from the hospital routine, so they drove up to Maine. They got talking to a man, a total stranger from North Carolina. He noticed a sadness in Shohreh’s eyes and asked what was wrong. They told him their story and he told them, “I have two kidneys. I don’t need them both.”

He went to the hospital to be tested and was found to be a perfect match for Robert. A 42-year-old man, bumped into in a parking lot, was willing to give up a kidney for a boy he never met.

The third miracle came a month later. The doctors at Children’s called the Moldenhauers in and said that Robert’s heart had strengthened to the point that he didn’t need a new heart anymore. All they needed to do was the kidney transplant, and with a living, willing donor standing by, they were confident the surgery would take place before the end of the year.

But a little more than a week ago the Moldenhauers were again summoned to a doctor’s office, and this time the news was not good. Their primary insurers were balking at paying for the transplant. Medicare won’t pay for anything because the primary won’t pay for anything. The operation is on hold.

“We asked how much it would cost and they said $250,000,” Shohreh Moldenhauer said.

So, in a country where we just spent $6 billion on political ads that insulted our intelligence, the real insult to us all is the idea that a 14-year-old boy would be allowed to die over $250,000.

I called Physician’s Plus, the Moldenhauer’s primary insurer, asking why they wouldn’t pay for Robert’s operation. Scott Shoemaker, the company spokesman, replied, “I am not able to discuss anyone’s medical information.”

But what could he say? What could he possibly say? When they have meetings in those finely appointed offices, at insurance companies all over this country, do they ever talk about families like the Moldenhauers? Are there, on the walls of their boardrooms, pictures of sick kids who get better?

The other day, Shohreh Moldenhauer stood in one of the dialysis rooms at Children’s, rubbing her son’s back. Robert, exhausted from a grueling session, chewed on small ice cubes. He was too weak to talk. He wore a blue T-shirt, emblazoned with the words, “Am I a child of God? Absolutely!” In the last year, he has shrunk from 95 to 75 pounds.

Shohreh Moldenhauer whispered encouragement to her son as she helped him into a hooded sweatshirt, then steered his wheelchair through the corridors and onto an elevator with practiced precision. She glided across the lobby, then pushed the wheelchair through the revolving doors, out onto the sidewalk, into the fading light of another day, waiting for another miracle.

Kevin Cullen is a Globe columnist. He can be reached at cullen@globe.com. Follow him on Twitter @GlobeCullen.
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