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.

Tuesday, September 4, 2012


This was the 20th Medical and Family Conference for the National Niemann-Pick Disease Foundation.

We considered going last year to Virginia, but it was way too soon after Dan's diagnosis and we were still adjusting to g-tubes and meds and all sorts of things. We also didn't want to live out of a suitcase again. So we missed last year. We promised we would go this year - and we did!

Yes, Dan wasn't physically present in a recognizable form, but he was there. And all the other kids were too, unfortunately, way too many in spirit.

A picture of the yearly tribute to those who were lost since the last conference.  There are 15 photos and candles on this table.  Once lit, these candles burned whenever the conference was in session.

Lisa Chavez created this wonderful tribute to those who were lost this past year.  Lisa makes all the candles that the NNPDF sends to those who lose a loved one.  You can see her creations here.

But we had a wonderful time.  We met so many wonderful people!

 Heather Taillefer, mom to Princess Monica (see Monica's story here: http://nnpdf.org/MonicaTaillefer.html)

Deanna Bourgeault, mom to Kaitlyn.  This was at a NNPDF Board of Director's meeting at 7am!  Yeah, we needed our coffee!

Kayla holding Kamryn Brumbeloe

Lisa Chavez, mom to angel Breann, and Melissa Higgins

Karen and Gene Quandt, parents to Ty.

 Rebecca Spencer, with her son Johnathan.

Jami Chavez (dad to angel Breann), Chip and Cole Bourgeault (dad and brother to Kaitlyn)

There were so many others!


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