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.

Other Families

Other Families

Family Blogs

Type A/B

Angel Kaitlyn Bourgeault (NPA)

Angel Jacob Brooks (NPA/NPB)

Angels Faith & Riley Robbins (NPA)

Angel Quinn Linzer (NPA)

Angel Trek Atlas (NPA)

Angel Mia Watts (NPA)

Angel Amber Jelsma (NPA)

Type C

Angel Tylor White-Richardson (NPC)

Katie Limer (NPC)

Kamryn Brumbeloe (NPC)

Lorna Tyrell, mom to angel Naomi (NPC)

Angel  Emily Hrback (NPC)

Ed Sharp (NPC)

Julia Kain (NPC)

Mael Oetterli (NPC)

Cody and Kayla Ruthven (NPC)

Katha McGregor (NPC)

Family Websites

Addi and Cassi (NPC)

The Stults Family (NPC) (Angel Brisan, Parker and Duncan)

Angel Wylder Laffoon (NPA)

Angels Cathryn and Corynne Bouchard (NPC)

Dillon Papier (NPC)

Mindy Fagan (NPC)

Angel Luke Liegghio (NPC)

Angel Monica Taillefer (NPC)

Kaden Hartman (NPC)

Family Businesses

Willow Wicks - candles and spa products in memory of Breann Chavez (NPC)

Wyler Nation - merchandise and Warrier Baby and Little Wish in memory of Wylder Laffoon (NPA)

Jarret Ingram - The Three Brothers go to the Beach! and Following After Trek in memory of Trek Ingram (NPA)

Rozetta Beckman - What Matters Most, Living with Young Adult Onset NPC, in memory of Chuck Beckman (NPC)

Stults' Sweets - cake pops and other sweet goodies in and around the Kansas City, MO area. Mother to Brisan and Parker (NPC) and Duncan.

Creations for Rubee - A little girls boutique for all her needs! Handmade items mainly for girls, but also boys. Mother to Brisan and Parker (NPC) and Duncan.

Family Charity Organizations

Ducks for Bucks - All money raised goes directly into the hands of families caring for children with NPC, so they can personally apply it towards their greatest need at the time.  Created by the Chavez family in memory of their daughter Brianna.

Lee King Bass Tournament - Hold a fishing tournament for adults that will provide funds for Niemann-Pick disease research  to find a cure for this devastating disease. Created in memory of Jimmy "Lee" King (NPC)

Breakthru Fund - We have established the Smith Family BReaK Thru Fund in honor of three of our children, Braden, Riley and Keaton, who have been diagnosed with Niemann-Pick Type C disease (NPC).

Cycle 4 Sam   - The Sam Roberts Family Fund is dedicated to the memory of Sam Roberts who passed away on April 19, 2005 at the age of 4 years 10 months. 

Race for Adam - The Race for Adam Foundation, a volunteer non-profit organization dedicated to funding research projects to find a treatment and cure for Niemann-Pick Type C disease (NP-C)

Hadley Hope - a non-profit corporation which allows us to raise awareness and funds for research, therapies, medication, clinical trials, and research that may potentially provide a cure for our children as well as others in the U.S. and around the world. 

Fishing for Charities -  Our mission is to aid existing charity fishing tournaments and help start new charity fishing tournaments by networking, consultation and when possible funding of equipment.  Created in memory of Raiden Linkous (NPC).

Chase the Cure - Our Mission Statement: Get treatments out of the lab and into the patients. Too many fantastic ideas lack the funding needed to explore them and this generation of Niemann Pick Patients will lose the opportunity to benefit from them if we don't get to work.  Created in honor of Chase DiGiovanni (NPC).

Ara Parseghian Research FoundationThe Ara Parseghian Medical Research Foundation is a non-profit organization dedicated to funding medical research projects to find a treatment for Niemann-Pick Type C (NP-C) disease. The Parseghian Foundation is named in honor of Ara Parseghian, the much beloved and well-known Notre Dame Football Coach, whose three youngest grandchildren were diagnosed with NP-C in 1994. 

DART (Dana's Angels Research Trust) - Dana’s Angels Research Trust (DART), a 501(c)(3) organization with strictly charitable purposes, was founded by Phil and Andrea Marella to fund medical research, medical education, or medical or hospital care for the treatment or cure of Niemann-Pick Type C disease (NPC) or other similar genetic diseases.