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Bipartisan Bill Could Help Kids With Rare, Complicated Medical Issues

Florida resident Tish West, the mother of a 19-year-old with a rare neurological condition, has been fighting to get her daughter appropriate medical care for years.

After Caroline West's birth, her mom couldn't keep her job at Barnett Banks of Florida because she had to devote so much time to caring for her daughter. The Wests' had to take expensive visits, not covered by insurance, to children's hospitals in Miami, Boston, New York and Chicago just to get a diagnosis.

"We were visiting many specialty doctors and had a difficult time getting the doctors to consult with each other," said West. "There was an occasion in the diagnostic process that we had to be admitted to the hospital just to get our various providers to talk with each other." And it was uncomfortable in the waiting rooms as Caroline sometimes had seizures.


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