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Navigating Medical Complexity Coping With Loss Neurojourney

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Theme: Clinical Trial: Decision-Making

We weren’t tempted to do any experimental trials.

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We weren’t tempted to do any experimental trials.

We weren’t tempted to do any experimental trials.

accParents of a little boy with SMA-Type 1 talk about how they considered (and dismissed) doing experimental trials. Mom didn’t want to fly all around. Dad: “I know it might help children down the road and so it was a selfish decision on our part.” Mom: “experimental things scare me.”

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