Saturday, May 2, 2015


There are, of course, many accounts online of parental devotion to a child with neurological handicap, but one that I find particularly moving and leaves me with intense admiration for the parents is found at
This is a 4 year old boy with multiple sulfatase deficiency. After an intense quest for an effective therapeutic intervention, with none such available, the parents are striving to provide the best in palliative care. Most interesting are the journal entries, which are fundamentally generated daily.

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