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Navigating Medical Complexity Coping With Loss Neurojourney

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Theme: Siblings

This isn’t happening to them, it’s happening with them.

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This isn’t happening to them, it’s happening with them.

This isn’t happening to them, it’s happening with them.

Parents of a son with Sanfilippo Syndrome talk about how they talked about Ben with his healthy siblings. We tried to help them understand how it was going to impact them. When we had to decide about spinal surgery, we did involve them in the conversation. They were older in their teens and we tried to involve them in issues that changed our family structure.

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