Moving From Helpless to Helped

Moving From Helpless to Helped

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Moving From Helpless to Helped

One of the most difficult things about having a child with an incurable terminal condition is the feeling of helplessness that comes with it. When Will was diagnosed with Sanfilippo syndrome seven years ago this month, it was crushing to realize that we were going to bear witness to the slow breakdown of our son’s brain and body, and that there was nothing we could do to stop it. As parents, we were supposed to…

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