10 Months ago my nephew Qais past away
Gad bless his soul
, after 16 months of suffering from NPD type A ..
And joined my two sisters and brother who past away years before him. .
I am so angry ,
And I get anger and anger when I can't do anything to release my anger .
I am angry that I have to explain to the doctor what exactly npd mean after rushing in the middle of the night to the ER for 15 minutes. .
Before she attended to save him
I am angry that after almost 30 years ... when my brother past away from NPD type A
We still live in a world where most doctors lack
The awareness for Niemann-pick disease
I am angry that billions of dollars spend on makeup industry and other unnecessary things
The things that matter the most are marginalised
Despite my anger. .there are some good people
Who deducted there lives to help others
I would like to thank them
specially Chris Klauer from NNPDF
and Eileen Linzer from The QuinnMadeleine Foundation
Thank you so much for helping Qais and many other in need
and i am willing to start a foundation for npd in jordan
to help those in need