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.
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.