I am sharing my nieces own words in hopes of helping her  be able to have a bone marrow transplant.

Hi my name is Kira Petersen, I am 16 years old.  After months of testing I have been diagnosed with an ultra rare, life threatening blood disorder called PNH which stands for Paroxysmal Nocturnal Hemoglobinuria.  There is only one medicine to help manage the PNH, which I have been on for a few months and it is not working for me.  My next step is a bone marrow transplant, which is the only  cure  PNH.  We have found that my brother is a match for me which is a HUGE blessing!   I have begun the pre-transplant testing and  fertility saving treatment.   These treatments are very expensive and my parents and I would be so grateful for any help you could give us in covering the costs of these procedures.  I will be admitted to Phoenix Children's Hospital at the end of May 2015 for the bone marrow transplant with much  faith that I will be cured of  this rare disease and be able to live a long and healthy life!  
For informatin about PNH you can go to the website www.aamds.org.