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Sanfilippo/MPS -- End of Life, Hospice: How long is this going to take?

"How much longer is this going to take? I felt guilty for feeling I couldn’t deal with weeks of her struggle." The mother of a 13-year old with Sanfilippo speaks candidly about the last few weeks of her daughter’s life, how challenging it was to find the balance between pain management and alertness, accepting that she was dying, bringing on hospice, wondering how long this period would last, being there at the very end, and then the hour or so after. That is an experience a parent should NOT have to live through.    • Sanfilippo/MPS -- End of Life, Hospic...   If your child has Sanfilippo or another pediatric life threatening illness, this mom shares her perspective which may help you find your way.   Visit www.courageousparentsnetwork.org for more videos.