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Stories of Hope

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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.

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...

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...

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...

Luke Gane

Luke Gane, Aplastic Anemia Survivor and UCLA Bruin

At the time, Luke Gane considered himself a typical sophomore.  It was July 2008, and Luke was getting ready for the all-important junior year of high school football season. He had his wisdom teeth removed and afterwards, found himself spitting up blood.  It was chalked up to a side-effect of the surgery.  Little did Luke know, his health was in jeopardy.  In the days ahead, Luke became fatigued; shortly thereafter, a 2-hour nose bleed turned into a trip to the emergency room.  After a...

Mary Upton

Mary Upton, Aplastic Anemia Survivor, Springfield Virginia

After a couple of weeks of constant nose bleeds and mouth ulcers, three doctor visits and a bone marrow biopsy that showed hardly any cells, I was finally diagnosed with Sudden Severe Aplastic Anemia in November 1997 at the age of 45.  NIH would not accept me as a patient and it was through the perseverance of Dr. Robert Brodsky, that Johns Hopkins accepted me, knowing that I was a full-time student with a maximum on my insurance policy that wouldn’t begin to cover all my medical expenses. I...