A baby boy in the Chicago area is battling a rare disease and desperately needs a drug treatment for a better life. The drug has not been FDA approved, and it could disappear if it isn’t soon.
At issue is whether the U.S. Food and Drug Administration will approve the drug that is currently used to treat an ultra-rare disease called Barth syndrome. It’s so rare, the FDA has delayed its approval in part because the sample sizes are so low…