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. 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.

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"I discovered that I might not live to my 40th birthday."One of the last things I expected in life was to be diagnosed with a rare disease.  After completing my PhD in Food Science at the University of Minnesota in 1998 and starting a career as a product development...
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I was a freshman in college when I was diagnosed with aplastic anemia. I didn't have a bone marrow donor match, so I opted for the ATG and Cyclosporine treatment. After experiencing seizures, which are a rare side effect to the treatment, I began the slow process of recovery. I...
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In Karen's own words: My name is Karen Witter and my journey with aplastic anemia began 58 years ago in November 1955. I was eight years old when I was taken to Children's Hospital of Philadelphia (CHOP), 90 miles from my home in Lebanon, PA for a severe kidney infection. I was...
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It’s a terrible thing to lose a child. When 20-year-old Torry Yahn made her final request, “Mom, find out why” to her mother JoAnn, there was only one thing left to do. JoAnn took her grief and turned it into an advocacy effort that has raised over $415,000 for bone marrow...
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“I never even had a cavity before I was diagnosed with PNH, plenty of denial later, I now live my life with PNH in it and don’t let PNH run my life!” I lead an ordinary life, a healthy life.  My name is Alani and this is my story. I was born in Massachusetts, raised by my...
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“I lost my Dad Tony Ames to MDS in 2011.  It has become my goal to raise awareness and funds for research so that people in the future don't have to suffer with any of these bone marrow diseases.  I volunteer for AA&MDSIF, which is an organization that provides...
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I met the Quinonez family in 2011 and after hearing about Kai's story I knew that I wanted to help in any way I can. I volunteer because there is a need to raise funds for research and the resources that benefit the patients and their families. I see the Quinonez family at...
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Garrett was a bright and happy young boy when he came to live with us in 1977.  He was a boy's boy joining a family of four girls and a baby we adopted at the same time.  He was already 8 years old at the time. It is very sad that MDS (myelodysplastic syndrome)...
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I was diagnosed with PNH around June 2006 at The Children’s Hospital of Philadelphia (CHOP). By that time, CHOP had become a second home for me. I spent my adolescence battling aplastic anemia since 2002. My body decided to turn on me at very pivotal points in my life. My...
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For more than 30 years, the Aplastic Anemia & MDS International Foundation has provided “Answers, Support, and Hope” for patients and families living with aplastic anemia, myelodysplastic syndromes (MDS), paroxysmal nocturnal hemoglobinuria (PNH), and related rare bone...