Children's Hearts and Legs Fail While 'Flummoxed' FDA Fumbles

November 10, 2014 3:24 PM

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On this very morning one year ago, I woke up to an email that marked the beginning of a surreal nightmare that still -- to this day -- has no end in sight. The subject line was simple. Just one word, all caps. Short and harsh, it starts with the letter F, and you can guess the three letters that follow. It's the only word that suffices when you know you are completely screwed.

The body of the email had no text, just a link to a press release from a biotechnology company that is developing new medicines to treat genetic illnesses. One of those illnesses is a devastating, uniformly fatal disease that will kill my son Charley if a therapy does not become available in time to...

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