Non-Profit to Cover Boy's Potentially Life-Saving Surgery

Non-profit coordinating with Duke University on cost, care for Seth Petreikis

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    NEWSLETTERS

    Hours after getting the news their son will be able to have an expensive but potentially life-saving surgery, Tim and Becky Petreikis express their gratitude and lay out what's next for the boy.

    It looks as though it'll be a brighter Christmas for an Indiana family whose son needs an expensive, potentially life-saving operation.

    MDwise, a not-for-profit managed care organization, has agreed to pick up the tab to cover the costs for a thymus transplant for 4-month-old Seth Petreikis.

    Petreikis was recently diagnosed with Complete DiGeorge Syndrome, a rare and fatal condition which inhibits the body's immune system.

    "Without this surgery, Seth is going to face infections and wouldn't make it to his second birthday," said MDwise spokeswoman Jamie Bruce.

    There will be no cost to the Dyer, Ind., family, she said.

    Medicaid last weekend denied the family's appeal to cover the costs of surgery -- which was expected to run into the hundreds of thousands of dollars -- deeming it experimental.

    But MDwise's medical director, Dr. Caroline Carney Doebbeling, said she's reviewed the clinical trials performed at Duke University, where the boy will have the surgery, and liked what she saw.

    "It's a rare condition and this procedure has been very successful in the clinical trial and compels us to give this baby a chance," she said.

    Carney Doebbeling said she spoke with the boy's mother, Becky Petreikis, and informed her of the news early Friday afternoon.

    "She was delighted," the doctor said.

    It's unknown how much the surgery will ultimately cost, but Bruce said those conversations with the North Carolina hospital have begun.

    "It is not a type of procedure that has a normal fee structure around it, so it will have to be something that will have to be negotiated," she said.

    An appointment for the surgery has not yet been set.

    Following television and published reports of the boy's plight, donations poured into the family's website, SethBenjamin.org.  Within two days, more than $147,000 had come in. 

    Becky Petreikis said that with her son's costs covered, the donated money will be used to lobby the Food and Drug Administration to get the procedure deemed non-experimental so that another family can avoid a similar struggle.