Stories of Hope

Beyond the statistics of bone marrow failure diseases are inspirational stories of hope and courage. From patients and families who fight these diseases to the volunteers in communities across the country who help to spread awareness, each of them has a story to tell.  

Meet these extraordinary people and learn more about them and their motivating stories of hope.  They are courageous and optimistic.  We know that you will find support and encouragement.

We welcome your story of hope - in print or on video. It will help many more patients and families.  Please email us at mystory@aamds.org or call Mike Breuer at (301) 279-7202 x111.  Thank you. 

Please visit this page frequently for new stories to read and share with your family and friends.

The Aplastic Anemia & MDS International Foundation (AA&MDSIF) created and maintains Stories of Hope as a service to those dealing with aplastic anemia, MDS, and PNH. Some of the stories on this site discuss medical treatment options patients have used; however, these stories are not intended as medical advice and should not be construed as such. AA&MDSIF recognizes that each patient, their treatment options, and the circumstances surrounding their bone marrow failure disease, is unique.

Note that inclusion of information in a Story of Hope does not constitute an endorsement or recommendation of any medical care provider, treatment practice, medication, product, or manufacturer. AA&MDSIF encourages patients to seek medical advice from a qualified hematologist/oncologist and to discuss their individual questions and concerns with their doctor. 
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My odyssey with bone marrow failure diseases began on Mother’s Day, 2007 when I found a deer tick embedded in my upper arm.  Three weeks later, a positive Lyme’s disease test qualified me for ten days of doxycycline (an antibiotic).  About six or seven days into my...
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I lost my Dad to MDS in 2005 and became involved with the Aplastic Anemia & MDS International Foundation the following year. After the emotional journey my family and I took during his treatment and subsequent death, I needed to do something positive to honor his life and...
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This year marks the 25th year I have survived paroxysmal nocturnal hemoglobinuria.  (PNH)  How fortunate and blessed I feel, that I can say half my life I have survived my PNH diagnosis.  Taking a look back at how my journey started -- just having completed...
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I believe that a story is the shortest distance between two people. While this is my story, it is not just mine, I did not do any of this alone. In April 1983, my husband Joe and I were 25 years old and attending to the required pre-marital blood work. Next thing we knew, we...
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I first met Claire when I was 20 and we were both working at my family's restaurant. I met her mom Barb and Dave a little later on when they stopped by on their wedding night to dance on the rooftop patio! Claire and I have remained good friends and work at the same company....
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I became involved with Hope, Steps & A Cure after my friend Stephanie passed away from aplastic anemia in 2012. It hurt knowing my friend passed away at such a young age. Stephanie had big dreams including going on to college and finally being cured of this horrible disease...
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The end of 2012 forever changed my world after a close friend of mine passed away. Stephanie was one of the few people that would always put others first, no matter what struggles or problems she faced. She did not complain about the pain she dealt with. Instead, she would talk...
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Stephanie was a friend of mine. She was taken from this world too soon after losing her battle with aplastic anemia. Through Hope, Steps & A Cure, I hope that we can prevent someone else’s family and friends from going through the same pain that we did. By finding a cure and...
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When Stephanie came into our lives, she fit into our family like the missing piece of a puzzle. Steph was not just a friend to my daughter Jessica, she was more. She became part of our family. When we all first heard she was sick, she said she had Parvo and was in need of a...
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My daughter Stephanie Danielle Rice lost her battle with aplastic anemia and PNH on 12/10/12, at the young age of 19. Stephanie fought these terrible diseases for 5 years. Throughout her entire fight she maintained the most amazing, positive attitude. She never complained or...