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, February 6, 2014

Rare Disease Month - Day 5

It's February.  That means it is time to focus on Rare Diseases.  You can read more about what I wrote about the past 2 years by clicking on the links to the right.

This year, I am focusing on different people with Niemann-Pick Disease, one of the 7000+ rare diseases, and the one that took the life of my only son.

The NNPDF posted this on their newsline:

Stanley & Jeffrey Gottlieb Scholarship Award
"Connecting the Dots"
An essay by Chandler Smith

Chandler Smith, sister to Keaton (NPC), Braden (NPC ~ 10/3/1996 - 10/31/2006) and Riley (NPC ~ 11/11/1998 - 01/19/2014), recently wrote an essay about how living with three Niemann-Pick Type C siblings has not only changed her life, but her outlook on it.

This essay was written for submission to the Stanley & Jeffrey Gottlieb Scholarship, and was awarded to Chandler, who kindly allowed us to share her essay with you:

Anyone who reads it immediately can see why it was chosen. It shows that love is ever enduring, and that even when we lose, hurt and fight, what matters most is always with us, even if it can only live on in our hearts.  That sometimes loss isn't the end, but can also be a beginning.

With the recent and unexpected of loss of her little sister Riley, this essay takes on a much more personal meaning for the reader and proves to be a wonderful way to honor all of Chandler's siblings.

The Gottlieb Scholarship Fund was established in 2005 to share the beautiful and meaningful ways siblings incorporate their sibling experience into their lives and careers.  We congratulate Chandler on her essay and wish her the very best in connecting her dots moving forward.

For more information on the Gottlieb Scholarship Fund, visit: Here


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