Tag Archives: Barth

For kids with Barth syndrome, time is running out, parents say, unless the FDA acts

For kids with Barth syndrome, time is running out, parents say, unless the FDA acts

Gilbert Dryden probably only has enough medication to get him through the end of October, his mother, Madison, figures. Seven-month-old Gilbert has a rare genetic condition called Barth syndrome, one that can have dire consequences, like heart failure, extreme muscle weakness and a dramatically reduced life expectancy. Children who die early often don’t see their fifth birthday. Two infant deaths …

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