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Navigating Medical Complexity Coping With Loss Neurojourney

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Theme: Siblings

Clinical Trials: Relocation and impact on the sibling (Batten/CLN2)

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Clinical Trials: Relocation and impact on the sibling (Batten/CLN2)

Clinical Trials: Relocation and impact on the sibling (Batten/CLN2)

“How much did that year apart affect him? We don’t really know.” Parents of two sons, one of whom has CLN2 (Batten disease), talk about how they managed the year apart — when they were separated during the trial — for their older son who remained at home with dad; what they explained to him, how they supported him, how they managed to meet up periodically.

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