happy being trevy

  I’ve been silent on this subject for a long time now.  Too long.   During the silence Questcor has gathered their arrogant loins about them and is once again seeking to pillage the most vulnerable.  In the words of my friend and fellow Infantile Spasms advocate, Mike,   “the IS Community needs to band together and insure that our kids are protected.  Screw me once shame on you.....Screw me twice shame on me...”   While our open letter is aimed primarily at our community, the Infantile Spasms Community, we fully appreciate that the impact reaches further.  You have our complete and full permission to share at will with those whom you feel this will impact.  Together , we can make a difference!   **********   Questcor, the company that acquired the rights to Acthar (ACTH) in 2001 and jacked up the price of this Infantile Spasms treatment, is at it again.  They have acquired the U.S. rights to another IS treatment – ...

    As a result of Trevor's brain surgery, he lost vision in the right peripheral field of both eyes.  It’s called Hemianopsia and Wiki can tell you all about it .     He navigates so well that it's what I call a "hidden or sneaky disability".       Until he runs smack into a pole at summer camp and gets a ginormous goose egg over his right eye!   Poor baby, his aide said he hardly cried at the time or on the way home.  The accident happened right before go home time.  I guess he saved all his tears up for me.  Because the minute he opened the door he just melted into a sobbing puddle. He was exhausted and I'm sure, frustrated.   It's not fair when things that you DON’T EVEN SEE smack you in the noggin'!   But the good news is…he received a 4 week partial camp scholarship this summer.  That means he’ll have plenty of time to learn his way AROUND all the poles!   …danielle