Here, we are reposting with permission a letter from a woman inflicted with Aplastic Anemia, PNH and Leukemia cells. If you haven't written to Senator John McCain, please take a moment to do so; the life that your letter may save may be yours or that of someone you love. If you cannot write a letter due to your medical or economic situation, please send us a message through this BLOG so that we can help you to do so.
Senator McCain,
My name is Exie Williams and I am a survivor of 2 forms of bone marrow failure. I am in remission, but I am not cured. The treatment options for people with bone marrow failure is minimal. By eliminating funding for the Congressionally-Directed Medical Research Programs at the Department of Defense for Bone Marrow Failure research, is without a doubt devestating to myself and many others. This is the world’s largest research program dedicated to finding a cure for bone marrow failure diseases like aplastic anemia, myelodysplastic syndromes, and PNH.
I ask that you take a moment and view a support group page and see the faces of the men, women, and children that this admendment will effect.
http://www.facebook.com/AplasticAnemia
I was diagnosed with Aplastic Anemia, PNH, and leukemia cells when I was 31 years old. I fought the fight of my life. There was a moment during my fight that it looked as if I was not responding to treatment and my father had to ask me what my wishes were for burial and for my young children. My 70 year old father had to face the fact that he may have to bury his daughter because we were running out of options. Through much prayer and faith, I pulled through and I won my fight and claimed remission. Everyday through the support group I created I see families who are losing their faith and their hope. Young children are dying or suffering, mothers and fathers are dying or suffering because there are no options left for them.
When I received this news today, I was heart broken for those who are not responding to treatment and who can not find suitable bone marrow donors.
I ask and pray that you will reconsider eliminating this last bit of hope that so many are holding on to. We need this research program to continue so that we can one day possibly have a cure.
I thank you for your time and consideration in this matter. This is so very important to so many who are suffering from bone marrow failure diseases.
Best Regards,
Exie Williams
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Another letter to Senator John McCain:
Mr. McCain, I am the father of a 5 year old girl who has been diagnosed with MDS (myelodysplastic syndrome) This is a rare condition in which the body stops making blood or starts making malformed cells. This, as well as Aplastic Anemia, wh...ich she was originally diagnosed with, is a disease about which very little is known. 4 years ago, nothing was known, and they just supported the kids as best they could until they died. Leaps and bounds have been made though, and treatment options have become available, due in part to the DoD Bone Marrow Failure Disease Research program, which will be defunded as part of of an amendment you are adding to the Defense Appropriations Act for 2011. I understand that our deficit is out of control and spending must be cut, but when you cut medical research funding, you dont just cut the future of medical advancement, which is already under attack from the socialized medicine crowd. You also cut off the lives of people like my little girl, whose lives may depend on advances that have been and could be made on the strength of this research. There is so much waste in government as you pointed out in your campaign that could be cut or at least pursued before taking the knife to life saving research. I beg you for the sake of my daughter, Maelee Grace Sheehan, and on the behalf of so many others we have come to know as we fight this disease, please reconsider this portion of your cuts.
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