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, September 21, 2017


Dan was in diapers from the day he was born (premmie) to the day he died (size 5/6).  I was fortunate to have family help pay for them for many years and then NYS Medicaid reimbursed me for some as well. 

Those families with children who have special needs have to find a way to pay for them until at least age 3, sometimes longer. 
The need is there for more  than just those with special needs. Can you believe that 1 in 3 families have to make a choice between buying diapers and buying necessities like food or electricity.

Let's make sure all babies have enough diapers.  Order some holiday gifts at http://jillflinton.jamberry.com and help support No Bottom Left Behind Diaper Bank!

Tuesday, September 5, 2017

School days

Well, it's happening again.  It's the first day of school.  Something we never had a chance to experience with Dan.  And every year, it hurts seeing all the kids going back to school.  I feel my heart break when I see pictures of kids that are Dan's age - knowing what grade he would be in, what he would be doing.

For some reason, the start of the school year is a trigger point for me.  Maybe it is seeing the kids get a year older.  Maybe it is seeing what they are going.  It makes me realize how much I have missed. Don't get me wrong, I love seeing the pictures. It's just something we never had the chance to experience.

Shelby is starting Kindergarten next year.  I wonder if some of these feelings will ease. 

Saturday, September 2, 2017

Conference is over... Our work is just beginning

During May, June, July and early August, I spent countless hours organizing materials, helping with Conference logistics and making sure families were well supported.

One major aspect of the conference is our memorial table.  This year there were 9 frames.  Still 9 too many.
Progress is being made, slowly.  In the 5 years we have been going to the NNPDF Conferences, we have gone from 0 clinical trials to 4.  There is still much that needs to be done.

The other big highlight of the weekend is the Gala dance.  And a little girl enjoyed every minute of it!

October is coming.  That means awareness and a campaign: $25 for 25 years of support to families. Please watch for ways to contribute.