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.
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...
Marc Rogier
My Nurses Were an Inspiration
In November 2013, I was 22 years-old and going to school part-time for nursing while working as a Certified Nursing Assistant at an assisted living home. I was almost through my first semester of classes when I got a cold. I didn’t think much of it because my girlfriend, Abby, had been sick a few days before. By the end of the week I wasn’t feeling much better. Little pink dots (petechiae) on my arms and legs started to appear.
Over the next few days, I visited the doctor, went for lab work,...
Gloria Winter
Disease Won't Run My Life
My odyssey with bone marrow failure diseases began on Mother’s Day, 2007 when I found a deer tick embedded in my upper arm. Three weeks later, a positive Lyme’s disease test qualified me for ten days of doxycycline (an antibiotic). About six or seven days into my treatment, I was feeling worse, and called my primary care physician.
One day later, after receiving a blood test, my physician called and instructed me to have someone drive me immediately to the local emergency room for a blood...
Melanie Marquez
Hope in Action
This year marks the 25th year I have survived paroxysmal nocturnal hemoglobinuria. (PNH) How fortunate and blessed I feel, that I can say half my life I have survived my PNH diagnosis. Taking a look back at how my journey started -- just having completed college and newly married -- the first thing I did after being diagnosed was to seek out the support of other patients.
I found help through the National Organization for Rare Disorders (NORD) who mailed me a list of about ten patients...
Ellen O. Kalinosky
Biting into the Elephant
I believe that a story is the shortest distance between two people. While this is my story, it is not just mine, and I did not do any of this alone. In April 1983, my husband Joe and I were 25 years old and attending to the required pre-marital blood work. Next thing we knew, we were sitting in a doctor’s office because my blood counts were abnormally low. They told us there was something wrong, but they didn’t know what it was. Referring us to a hematologist/oncologist, we were told I would...