By Reed Abelson, New York Times

Giselle Fernandez is only 17 but she has had more than 50 operations since she was born with a rare genetic condition. She regularly sees a host of pediatric specialists, including an ophthalmologist, an endocrinologist and a neurologist at UCLA Health System. Her care has cost hundreds of thousands of dollars so far, and she will need special treatment for the rest of her life.

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