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 journey with MDS began in December 2007 when a game of volleyball with my youngest daughter left my arms bruised from wrist to elbow. This along with frequent headaches and fatigue prompted me to schedule an appointment for a physical. Little did I know my life was about to...
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I became aware of Hope, Steps and a Cure after my sister Sheila was diagnosed with aplastic anemia in 2007.  Sheila became ill very suddenly.  She was told her body was unable to replenish her platelets and her illness was life threatening.  And, our entire family...
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“My parents exemplified giving people,” says Carol Stewart.  “They weren’t wealthy, but they always gave.  It’s important to grow up learning those lessons.”  Carol took those important lessons to heart.  A musician and freelance writer, she and her husband...
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in Mary Jo's own words: For so long, I have been quietly racking up the years - 33 in all - since my diagnosis and transplant. I have done so well and had so few problems that I felt I had nothing to share. But as the years have gone by, I have begun to realize how few of us...
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I became involved with Hopes, Steps & A Cure because my beautiful younger sister Mia was diagnosed with severe aplastic anemia in 2009, at the age of 15. At the time I was a senior in high school and all I knew was that my sister was very sick with a rare disease. However,...
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“My parents exemplified giving people,” says Carol Stewart.  “They weren’t wealthy, but they always gave.  It’s important to grow up learning those lessons.”  Carol took those important lessons to heart.  A musician and freelance writer, she and her husband...
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My name is Yajaira and I am 24-years-old, and live in Victorville, California. It has been about two years since I was diagnosed with aplastic anemia. I was a very active, outdoor person who played sports. Never did I think in a million years this could ever happen to me, but it...
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On July 4th, 2014, my 23-year-old son, Jordan, coming from the Washington DC suburbs, visited us (Barnett and Nelda Brown) in La Place, Louisiana. He wasn’t feeling well, so I convinced him to go to urgent care before leaving to return home. He was given antibiotics because he...
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“Walking into a chemotherapy room is not an easy thing to do, even if you know that it is the best thing for you.” I was diagnosed with PNH in 2009 at the age of twenty-two. In my eyes, I was invincible. I could even count how many times I had gotten sick throughout my life on...
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Our Volunteers – Remarkable in What They Do for Patients, Families, and AA&MDSIF We’re Dave and Christie Mendlik and our family is just like yours.  We have always been grateful that both our girls were so happy, and healthy, and lived normal lives.  Our days had...