The story of Jonathan
I am 26 years old. I am the face of Gauchers type 3b. I am a victim of its unmerciful uncaring and callous progression. Gauchers is a thief of LIFE ! It has no mercy! Nevertheless! It can never take my WILL my COURAGE to FIGHT! Cause my FAITH is grander than this Goliath. My mother tells me how brave I am I have endured life’s mishaps and tough trails as I battle since I was 2.5 years old. In my journey I was humbled to have been under the care of the late Emeritus Dr. Roscoe O. Brady. My mother Elena Ghafouri and I miss him dearly. She alone has raised me ! My fate is still in the woods ! But again my faith remains above FEAR! There’s a lot of things I won’t get to do! Like that of a normal youth ! Yet my HOPE lies in that we seek FUNDING for SCIENCE! and REWARD those beautiful minds men and women whom unselfishly want to make a difference in our lives ! to reshape nature’s mishaps! To change and tackle devastating and cruel rare genetic diseases and their cruel progression ! My dream is if in my lifetime humanity reign and embrace the few we are in the global stage yet we are vulnerable to be left behind in key fundings for research! It remains in my prayers that somehow someday a breakthrough emerge in this arena with this thief I live with Gauchers be someday defeated eradicated and like it : Tay Sacks , Neiman Pick, Parkinson’s, Dementia be CURED.