A blog about the grief after losing a child to Niemann Pick, Type C, a rare disease, and how I'm moving forward with my life.

Thursday, April 17, 2014

How Paper Can Be Upsetting

Another round of tears tonight.  This time it wasn't Shelby.  It was a piece of paper.

I was doing some cleaning and organizing tonight and came across a credit card statement from our big 3 week trip to Boston Children's when we received Dan's NPC diagnosis in June 2011.

Food: $306.33
Parking: $81.00
Misc items: $84.25 (includes laundry detergent, t-shirts and other assorted items)
Gas: $51.01
Prescriptions: $54.47 (prescribed in Boston, filled in NY, after insurance payment)
Total: $577.06

This does not include lodging for 3 weeks, ATM withdrawals, hospital charges, and other random items.

This is the real cost of having a child with an undiagnosed medical condition.  This is why people have fundraisers - to cover these out of town and unexpected expenses.  This is why parents with children with serious medical conditions can't take vacations.


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