Mystery illness fells young man

"The doctors say Cole's case is too complex, that they don't know how to deal with it, or that all tests have come back negative," she says. "Everyone else points us to neurology but we can't get a neurologist."

Even Stanford can't do anything more. Although doctors at Stanford initially thought Cole's illness might be limbic encephalitis, three follow-up tests at Mayo ruled it out, says Frankovich. "We can't treat him without a positive diagnosis."(Halvorson disputes that the additional testing was done and says she's never seen any documentation of the results.)

Raoul Benavides

Raoul Benavides

In a matter of months, Carrie Halvorson watched her son Cole regress to a big kid with the mentality of a four-year-old

Details

Also see our expanded web content, including the PHOTO SLIDESHOW and an extensive REPORTER'S NOTEBOOK about disciplinary actions against doctors. You can also visit Carrie Halvorson's personal Web site.

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More About

• Carrie Halvorson
• Ashish Kumar
• Stanford University
• Tuberculosis
• Medicine

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Out of desperation, the family is turning their private medical records over to the public in hopes that a doctor familiar with central nervous system tuberculosis will look past the politics and help their son.

Today, Halvorson has stopped working and spends 12 to 16 hours each day researching diseases and searching for medical care overseas. Boxes of medical paperwork and tapes clutter a corner breakfast nook in her half-million-dollar home. The family has cashed in their 401k and is preparing to sell a summer lot they own in Spooner. "The next thing is the house, but what do you do? Money doesn't matter. This has never been about money. We'd give everything away and live in a trailer if this could stop," Halvorson says. "It's like our son is drowning and people are just standing around on the shoreline watching, and so are we, but our hands our tied and nobody else will help."

A Note on Sourcing:

All of the doctors named in this piece were notified that City Pages would be using taped conversations they had with the Halvorson-Haakana family and were given the opportunity to comment. In all cases, the family was willing to sign release forms allowing medical staff to discuss Cole's case publicly. Unless otherwise noted, the doctors either did not return our phone calls requesting interviews or they declined to comment. The family provided the recordings and medical documents used in this article to City Pages.