Emilee's angels

In January of 2011 Emilee started showing symptoms of bruising, lightheadness, yellowing eyes and skin.  In an ER visit it revealed that Emilee's blood levels were at dangerous levels.  Doctors believed that Emilee had leukemia.  It was found in fact that she did not have leukemia.  After several test coming back negative, it turned out that the children's hospital had know idea what Emilee had.  It took almost 1 year to diagnose her.  Doctors had never seen anything like it.  The last test they did came back positive.  She was positive for Paroxysmal Nocturnal Hemoglobinuria or PNH.  What this means is that her red blood cells lake the protective protein coating around them causing her immune system to attack and kill live baby cells.  This disease is so rare on 1 in 1 million have it.  The only current cure is a bone marrow transplant that would relieve her body from the disease.  None of her family members where matches for her marrow, meaning she would need a nonallogenic transplant which is higly risky and could potentially cause much more problems.  Currently Emilee is on a non aggressive chemo treatment called Soliris.  It is the single most expensive drug in the world.  Although Soliris has indeed gotten the most important symptoms under control like Shortness of breath, numbness of throat, chronic fatigue, dangerous blood levels, blood clots and stroke, Emilee still has symptoms.  The medicine controls intravascular break down of cells but not extravascular break down.  Meaning Emilee is still tired a lot, she remains jaundice a lot and still has bruising.  Currently Soliris is the only drug available for this disease.  To learn more about this disease you can visit http://www.aamds.org/ .