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.
Won Kyun Koh
From Patient to PhD Candidate
When I was 13 years old, I was diagnosed with severe aplastic anemia. Doctors told my parents that I had six months to live unless I could find a matching stem cell donor. In Korea, where I’m originally from, much less was known about aplastic anemia than is the case today and the only treatment option given to patients was bone marrow transplant.
Unfortunately, no potential donors were located and as a desperate measure, my family looked elsewhere for alternative treatment options. We were...
Caitlin Hughes
Patient Inspires Workplace Giving
I was just past my 19th birthday when my family and I realized that something was severely wrong with my health. Throughout high school I was always fatigued, and bruised very easily. I also experienced what I now know as petechiae – little red dots all over my body caused by bleeding into the skin due to low platelet counts. After I got to know what the symptoms of aplastic anemia were, I later realized that I had at least some degree of the deficiency for about two years before I was...
Tami Meidinger
My Son, the Athlete and Survivor
I am the mother of 4 boys, now ages 13, 14, 18, and 20, and we live in North Dakota. We took our third son Samuel to the doctor just before Christmas of 2008 when he was 7, and it was about a month and many tests later that he was finally diagnosed with severe aplastic anemia (SAA). The whole family was tested at the Mayo clinic for a bone marrow match, but none of us were a match.
Sam then received immunosuppressive therapy and he responded quickly and quite well to cyclosporine. But once he...
Kaitlin Gibson
Aplastic Anemia Alters Student's Perspective
It was August 2011, two days into the fall semester of my junior year of college at Penn State. I was excited to be surrounded by friends as we ran a booth for a fall fair when I got a phone call from a nurse at my primary care doctor’s office. She sounded concerned, so I quickly tried to weave my way out of the crowd to a quieter environment when I heard her say “are you bleeding right now?!” How does one respond to that kind of question? I replied, “No. And why?” She told me, “You’re...
Emily Hoak
Persistence and Patience Pays Off
My professional career for thirty years was with Colonial Williamsburg. I led children, adults, and even a king and queen on tours to explore our colonial history. I retired and shortly after turning 66, I was diagnosed with rheumatoid arthritis and treated with methotrexate. This may have led to my developing severe aplastic anemia, although it cannot be proven that methotrexate was the cause.
I was determined to take control and sought additional advice from Johns Hopkins Hospital. My local...
Derek Cope
"You Can't Beat Me!"
After graduating college, most young people are ready to take a break, go to the beach or maybe on a trip to Europe before getting serious again. Not two-time Matthew Debono Scholarship recipient Derek Cope. Derek embarked on a three-week study-abroad trip in June to Tanzania, where he visited hospitals, schools and orphanages to learn how health is delivered in Africa.
Derek lives life like there’s not a moment to waste. His diagnosis of aplastic anemia has a lot to do with that. In the...
Jake Sanborn
“Mom, it’s too late. I’m dying.”
My husband Rick and I knew Jake was not feeling well. He kept denying it and saying he was fine. A bloody nose scared me, and then I remembered how my brother-in-law had them as a child and thought it was hereditary. Then his high school said he had another. He began to ask us if he looked pale. We said that he did. He also was coughing and seemed lethargic. We encouraged him to go to the doctor, but he said he was fine.
It must have been divine intervention, because when his truck broke down...
Dylan Martin
MDS Patient Becomes a Role Model
My name is Dylan Martin. I am 24-years old and I was diagnosed myelodysplastic syndromes (MDS), or, at the age of 17. It is familial MDS - the cancer runs in my family. When my mother, Leigh Ann, was first diagnosed, doctors told her she would never have to worry about my brother and I having it. Unfortunately, the doctors were incorrect. When my brother, Patrick, was 19, he was also diagnosed. About a year and a half ago my grandmother, Mary, found out that she had MDS.
According to the...
Colin Powell
Comedy Became My Drug
It was early April of 2015 when I started getting headaches, weakness and abnormal heart rates simultaneously whenever I exerted myself. Stairs became a nemesis, as I could feel myself about to faint whenever I reached my apartment on the third floor. I thought that now would be a good time to visit the doctor. There I had blood work done and a few hours later they called and told me to go to the ER immediately. “So…I shouldn’t go hiking right now?” I joked, despite the weakness in my legs....
Mariah McHenry
BMT Meant 'It Could Finally Be Over '
At the last race of my high school cross country career, I stood on the starting line with one hundred other girls and repeated only one thought - “just finish”. I didn’t think about winning. I didn’t think about beating any records or trying to beat anyone, for that matter. I just wanted to finish. I wanted to look back and know that I did this one thing for me. I wanted to know that I did something that scared me, something that no one expected me to do, and something that I wasn’t even sure...