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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.

Ndeye Anta Sene

"PNH is a Part of Me" - Anta Sene finds that acceptance leads to hope

My name is Ndeye Anta Sene. I am 22 years old and live in Maryland.  I was born in Senegal, in West Africa and in December 2007 came to the United States by myself at age 16 due to medical issues. My symptoms, including fatigue, shortness of breath, and dizziness, started at the age of 14 while still living in Senegal. I was admitted to a hospital for a month because the doctors could not determine a diagnosis. They finally came to the conclusion that I had severe anemia and the only...

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...

Eric Hodies

Eric Hodies – A Study in Attitude and Self-Advocacy

The Diagnosis In 2002, 41-year-old Eric Hodies was a devoted triathlete, training for his 21st Virginia Beach Sandman Triathlon. He had competed in the event every year since its inception, and he was looking forward to another great race. But in the months leading up to the event, he noticed that he was getting slower and slower, despite the fact that he was increasing the intensity of his workouts. Ever attune to the signals his body was sending him, he went to a doctor. He...

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...

Mary Miller

Mary Miller: Beyond Watch and Wait - A Mind, Body, Spirit Approach to Living with MDS

In 2005 at age 70, Mary Miller of Doylestown, Pennsylvania was diagnosed with MDS. Now 77, she says of her diagnosis, “My initial reaction was that I had never heard of it, so I looked it up online and scared myself half to death!” Like many MDS patients, the first indication there may be a problem came from experiencing significant fatigue. “I was tired and cold all the time, and my hair began falling out. At first, my primary care physician thought the problem was low thyroid and prescribed...

Kyle Malmstron

Kyle Malmstrom – Saved by Identical Twin, Young Aplastic Anemia Survivor Literally Brings Comfort to Others

Written by Kimberly Malmstrom Our son, Kyle, was a normal active 11-year-old who enjoyed climbing trees, swimming, and running. He loved to run around and play with his friends.  The first week of school last fall was normal for Kyle.  He was excited to see friends and meet his new sixth grade teachers. However, throughout that week, he developed large bruises. Some had known causes - others did not.   Kyle then noticed purple dots (petechiae) on his legs.  By Saturday of Labor Day...