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.

Sunday, October 28, 2012

Family Pages

October is Niemann Pick Disease Awareness Month.

If it wasn't for families to have traveled this path before, and those who are currently traveling it, there wouldn't be as much information for those who are newly diagnosed.

Over the past 18 months I have learned a tremendous amount from other families - not just medical information (symptoms, "remedies", etc), but about PERSEVERENCE in the face of adversity, and above all LOVE.

I've listed below the blogs of other families that I currently follow.  Please send them some love too.

Type A/B

Angel Kaitlyn Bourgeault (NPA)

Jacob Brooks (NPA/NPB)

Angel Faith & Riley Robbins (NPA)

Quinn Linzer (NPA)

Angel Trek Atlas (NPA)

Angel Mia Watts (NPA)

Type C

Angel Gavin Lopez (NPC)

Tylor White-Richardson (NPC)

Katie Limer (NPC)

Kamryn Brumbeloe (NPC)

Lorna Tyrell, mom to angel Naomi (NPC)

Angel  Emily Hrback (NPC)

There are other families who have taken the blog further and created full websites with lots of information.  Prior to, and just after diagnosis, when we were researching NPC, we relied on the top two websites below a lot.   Some have blogs inside their websites as well.

Addi and Cassi (NPC)

The Stults Family (NPC)

Angel Wylder Laffoon (NPA)

Chase Reedy-DiGiovanni (NPC)

Angels Cathryn and Corynne Bouchard (NPC)

Dillon Papier (NPC)

Julia Kain (NPC)

Mindy Fagan (NPC)

Angel Luke Liegghio (NPC)

Angel Monica Taillefer (NPC)

All of these are accessible on right hand side of the page under the picture.


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