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SanFilippo Syndryome/How palliative care can be there for you at end of life.

"The last 24 hours: We were not ready for it. "Wait a minute, we're off script."    • SanFilippo Syndryome/How palliative c...   Parents of a son with Sanfilippo Syndrome and their palliative care doctor discuss the last 24 hours of Ben's life and how they were faced with the question of intubation. Mom: "How did I get in this bad movie? I don't know what to do and I'm scared." Dad: "It wasn't what we'd planned but it gave us time to call our family." Palliative care helped us feel less trapped and helped advocate for us when we were occupied being scared and sad. Mom describes turning off the machine and everyone being in the room. If your child has SanFilippo Syndrome or another pediatric life threatening illness, these parents and their palliative care doctor share their perspective which may help you find your way. Visit www.courageousparentsnetwork.org for more videos.