Stories of Hope

To better understand the impact of bone marrow failure, we present stories told by the patients, parents, family members, and spouses who are living with these illnesses. Our entire community benefits from the insightful stories patients and family members share with us about their personal journeys.

Ron Duncan

Ron Duncan, Texas Walk Committee

I last gave blood in December 2004. When I went again in March 2005, I was informed that I couldn't give and actually really needed a transfusion. Eventually I was diagnosed with pure red cell aplasia, PRCA, a very rare condition where I don't make red blood cells. I struggled with transfusions and various medications for about three years. In April 2008, I found Dr. Maciejewski at the Cleveland Clinic and a doctor at the local medical school here in Dallas. They added an additional...

Heather Putney

Heather Putney’s Trials (and Travels) with Aplastic Anemia

There is no shortage of milestones when you are healing following a bone marrow transplant. You have the inevitable counting of days; day 21: being discharged from the hospital; day 90: having fresh produce; day 142: spending the start of Thanksgiving by jogging a 5K, day 300: biking 50 miles with a custom BMT survivor jersey to raise awareness for marrow donation; day 365: my new first birthday and a goodbye to precautions and meds; day 380: returning to work as a health care provider rather...

Ashley Oakes

Ashley Oakes – Blessed to Have Her Son, Her Family, and Her Life

It has been two-and-a-half years since being diagnosed with aplastic anemia. In September 2010, my husband, Scott, and I moved home to Vancouver, British Columbia from Calgary, Alberta where we had been living for the previous three years. I was six months pregnant and so excited to be going back to the city where all our family lived to share this wonderful time with them. We moved into a little house a few blocks from my mom and settled in to await the arrival of our little one. A few weeks...

Kathryn Bauer

Retired MDS Patient Living Life to the Fullest Since Transplant

I retired from Dun & Bradstreet, after 35 years of working all over the US and Europe as a business analyst and Vice President of Operations and Data Acquisition. I was living the life I had always aspired to -- traveling, volunteering for a number of non-profit organizations, taking the occasional consulting job, enjoying a few classes at the local college, and just having fun. Then, in August 2009, I had a blood test and it showed something was off with my white and red blood cells. I...

Ruth Cuadra

Long-term survivor and dedicated volunteer

2015 will mark the 17th anniversary of my victory over myelodysplastic syndrome (MDS). An unrelated-donor bone marrow transplant saved my life and cured me of the disease in 1998. I was originally diagnosed with aplastic anemia, in 1996, when a routine checkup showed that my blood counts were at life-threateningly low levels. I was treated with the immunosuppressant called ATG and experienced some improvement, but could never get back to normal blood counts. Eventually I was found to have...

Chris Nein

Inspiring young survivors

Christopher Nein recently earned his fourth AA&MDSIF Scholarship award. The aplastic anemia survivor is attending Eastern Virginia Medical School in Norfolk, Virginia and was recently married. As part of his application for the 2012 scholarship program, Chris wrote the following personal letter to all children and youth currently struggling with bone marrow failure diseases. In Chistopher's own words: Friend and fellow fighter: Most twenty-two year olds do not have vivid...

David, Nicholas and Elizabeth Manley

Mother Tells How Son’s Aplastic Anemia Impacted Entire Family

A horrifying diagnosis Barbara Manley found herself living every parent’s nightmare the night her two-year-old son, David, was admitted to the hospital for increasingly serious bruising. “The doctor said it’s either aplastic anemia or leukemia, and you’d better pray for leukemia. I knew leukemia was bad, so that was horrifying.” By the time of his diagnosis of aplastic anemia in January, 2002, David was dangerously close to spontaneous hemorrhaging. A blood transfusion provided some temporary...

Debby Cook

Feeling at home in the muddy water

"May we live like the lotus, at home in the muddy water.” Judith H. Lasater, PhD In 2003, I had no idea who Judith Lasater was, and I was not at all at home in the “muddy water.” I was a 5th grade teacher, I was hoping to start a family with my husband, and I had plans that in no way involved having a bone marrow failure disease. And yet, in September that year, a series of doctor appointments led me to Georgetown University Hospital in Washington, DC and to the National Institutes of...

Bunny Williams

Fighting PNH with Perseverance and Spirit

Bunny Williams was diagnosed with paroxysmal nocturnal hemoglobinuria (PNH) in the spring of 2000. Her symptoms were fatigue, stomach cramps, difficulty swallowing and jaundice. At the Phoenix Regional Patient and Family conference in March 2011, Bunny shared her story with other patients and families at the Celebration of Hope ceremony. In Bunny’s Own Words I would spend a good portion of the day on the sofa. My husband got the meals, washed dishes, did the laundry and...

Duane Draper

Builds supportive community to help him with MDS and bone marrow transplant

When Duane Draper was diagnosed with MDS in July, 2009, the 57-year-old father of two grown children was asymptomatic and didn’t even realize that there was a problem with his health. Though he had been feeling slightly more fatigued, he attributed it to aging and didn’t worry about it. However, during a physical, his physician did some routine blood work and discovered that all three of his blood counts were low. “Initially, I was really surprised to learn that my blood counts were low,”...

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