A frightened, newly-diagnosed Sanfilippo mom asked a battle-tested Sanfilippo angel mom (stacey montgomery) a question that stopped her in her tracks. here's how she replied.

A few years after her son Lucas passed away from Sanfilippo Syndrome, Iowa (IA) mom Stacey Montgomery was taken aback by a question posed to her from a newly diagnosed Sanfilippo mom looking for answers - "What do children with Sanfilippo actually die from?" As Stacey explained (during a Sanfilippo Roundtable conversation that took place in 2022) , it’s a complicated question - and each child's journey can be quite different from other children's.
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