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Sanfilippo/MPS: We hoped she would live to see a cure for her disease.

Sanfilippo/MPS: We hoped she would live to see a cure. The mom of a child with Sanfilippo describes how they thought about experimental trials -- Our goal was always quality of life, but if this prolonged her life by some years, then that would give more opportunity for a cure to be available. Her decline had been so slow. Eventually we probably realized it wasn't coming in time but there was always that hope.    • Sanfilippo/MPS: We hoped she would li...   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.