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.
Drew Daniels
Pediatric Aplastic Anemia to Coast Guard Officer: Drew Daniels
My name is Drew Daniels, and as a child I suffered from Aplastic Anemia. When I was 8, I remember my parents finding bruising on me, but initially thinking it was from just being an active child. I have pretty spotty memories of most of the treatment, my mom wrote an article for AAMDSIF 6 or 7 years ago from the caregiver perspective which highlights my actual treatment much more accurately than I remember. I finished treatment when I was 10, but unfortunately most of my early memories are of...
Jocelyn Boyer
“Everything is going to be okay:” Jocelyn’s Story of Aplastic Anemia, PNH, and Survivorship
Before diagnosis, Jocelyn’s life was normal, predictable. She was thriving her senior year in college, studying Public Relations. In 2008, she was working, volunteering, attending classes---all the normal activities for a 20-year-old.
But one day that changed. Extreme fatigue set in, making it difficult to walk a single flight of stairs. At first, she dismissed the fatigue to her rigorous schedule.
One Friday evening, the symptoms intensified. Jocelyn went to a local store’s grand opening...
Veronica Ruiz
How a Delay in Treatment nearly Cost her Life - Veronica's Story
Veronica learned that delaying treatment was not a good idea.
That delay nearly ended her life.
In 2018, Veronica was a busy mom, working full time, leaving the house at 5:30 a.m., returning at 5:30 p.m. She stayed healthy by working and staying active. She is a busy mom of two young children, and all the normal activities of modern life. One day, she thought she caught a bad flu, so she stayed home all week, unusual for her. When she returned to work the following Monday, she was exhausted...
Ashley Numbers
Ashley and Alayna: A Mother's Story
September 16 through December 20 will stand out in Ashley’s mind.
Forever.
These are the days she spent in the hospital with her feisty three-year-old, Alayna, for conditioning and bone marrow transplant.
The summer of 2019 was already big with a wedding to plan. The toddler and her baby brother were enjoying everything that small ones do, including riding dirt bikes with Daddy.
When an unusual rash showed up, Dad took her to the pediatrician’s office. Although the physician who saw Alayna...
Samuel Meidinger
2019 update! My Son, the Athlete and Survivor - Sam Thrives Years after Transplant
Following 7 ½ years in the wait and watch mode with Aplastic Anemia, it was August of 2016, that a bleeding hangnail sounded the alarms. By October 2019, my son and I were making weekly trips to his hematologist’s office, 5 hours from our home, for blood and platelet transfusions. The weekly transfusions went on for 3 months. Sam was a sophomore in high school and missed 1-3 days of school each week for travel and treatment.
Meanwhile, we were anxiously awaiting word on the work up results...
Johnnie Burford
Soldier faces down Aplastic Anemia in 1980, paving the way for ATG treatment!
Johnnie Burford was deployed in Korea. He was a muscular 195-lb athlete, a proud member of the US Army Second Division. Nothing stopped him from performing his duty. Yet a rapid weight loss of 100 pounds, coupled with unusual bruising, alerted him that something was very wrong.
At first, the assigned P.A.’s gave him iron supplements. Eventually, he was sent to the hospital for testing, and to his surprise, he was not allowed to return to his unit. On August 10, 1980, he was diagnosed with...
Stacy Bravo
Stacy's Aplastic Anemia Journey continues
Part 2: Immunotherapy begins!
The doctor in San Francisco confirmed that I had aplastic anemia. Treatment would begin with “triple immunotherapy.” I was admitted for four days for the treatment. He told me that if this didn’t work, I’d need to stay in there for four months for a stem cell transplant.
My first night of immunotherapy was so bad that I was going into shock. The next few days, it was a little easier but I needed blood and platelets. My body started to reject the platelets, so...
Stacy Bravo
Stacy's Journey through Aplastic Anemia
This new series will follow Stacy as she navigates the world of bone marrow failure disease. We’ll release each new chapter as she shares what she experiences. Watch for announcements and updates!
Part 1: Symptoms and diagnosis
My name is Stacy Bravo I have been diagnosed with a rare disease. I have Aplastic Anemia.
By sharing my story, I’m hoping to make a difference. I want to help others by creating awareness and encouraging everyone to become a donor for blood, platelets, or...
Precious Mathabatha
Precious Conquers Aplastic Anemia, a Story from South Africa
As a girl in South Africa, I was healthy and active. I started college at the University of Limpopo, studying Business/Accounting in 2011.
The next year, though, I started having unusual symptoms. I felt so exhausted that I had trouble getting out of bed. Then in October I noticed other changes. My skin was pale, and I had bruises all over. Because my skin is light brown, I didn’t make much of it. When I saw my dentist that month, the cleaning took longer than expected. The dentist handed...
Sara Scotti
Sara Faces Down Aplastic Anemia
Aplastic anemia entered my life when I was 20 years old. I was visiting my grandmother in Delaware when I first noticed some of the symptoms. I was feeling fatigued and was getting little pinpoint bruises all over my legs, now knowing it was petechiae. I went to the doctor – no blood work was done at first, but I returned a few weeks later because the fatigue had become extreme. At this time, I was starting to suspect some sort of anemia, where I could barely get up without being out of...