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Navigating Medical Complexity Coping With Loss Neurojourney

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Theme: Clinical Trial: Decision-Making

When your child is in an experimental clinical trial ….

Page: 3 of 3

When your child is in an experimental clinical trial ….

When your child is in an experimental clinical trial ….

The mother and father of a 5-year old with Leigh’s Disease, a mitochondrial condition, talk about how their daughter’s positive response to an experimental study drug means she has more time but they don’t know how much or what to expect. “When she gets sick, we don’t know if this is going to be the one.”

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