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.
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...
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...
Heather Vega
Doctor Helps Determine Her Own Aplastic Anemia and PNH Diagnosis
“I was fortunate to have a medical background, because with it I was able to help diagnose myself with aplastic anemia and PNH,” says Dr. Heather Vega. A Pittsburgh native, she is a family physician living in Bridgeville, Pennsylvania who received her medical degree from Lake Erie College of Osteopathic Medicine.
“I was 30 years old and in a hospital-based practice 12 years ago when I noticed a bruise on my leg,” says Vega. “It was so strange because a few nights prior, I had just had a...
Mary Jo Moss
Aplastic Anemia Patient Meets Physician Who Treated Her 30 Years Ago
For so long, I have been quietly racking up the years - 33 in all - since my diagnosis and transplant. I have done so well and had so few problems that I felt I had nothing to share. But as the years have gone by, I have begun to realize how few of us long-term survivors there are and how truly blessed I am to just be alive! By reading the comments when I post a milestone birthday, I am overwhelmed with the response from others who have walked this path, who are just beginning the journey, or...
Yajaira Suarez
Young Aplastic Anemia Patient Grateful That Life is Returning to Normal
My name is Yajaira and I am 24-years-old, and live in Victorville, California. It has been about two years since I was diagnosed with aplastic anemia. I was a very active, outdoor person who played sports. Never did I think in a million years this could ever happen to me, but it did.
I had just started my new job where I met Teresa, my manager. After four months of working there, she noticed there was something different about me. My skin was pale and bruised. I would get sick constantly and...
Jordan Brown
Family’s Support Spurs Recovery
On July 4th, 2014, my 23-year-old son, Jordan, coming from the Washington DC suburbs, visited us (Barnett and Nelda Brown) in La Place, Louisiana. He wasn’t feeling well, so I convinced him to go to urgent care before leaving to return home. He was given antibiotics because he appeared to have three cysts in his left arm. He made a second trip to urgent care in Virginia to have the cysts lanced and was given a blood test during the procedure.
On Monday July 14th, I received a call at 7 am...
Annie Tighe
Annie Tighe – A Second Transplant Saves Annie
This is the story of my beautiful granddaughter Annie, who celebrated her 13th birthday this April 2014. It’s also the story of Annie’s big sister Katherine, as well as of her mother Melissa, and her father, Tom (my son).
When my husband and I picked Annie up from pre-school in December of 2005, we noticed bruises on her arms and legs. Melissa looked over her body closely that evening and counted 14 bruises! She immediately took Annie to her pediatrician, who took one look at her and said...
Al Meyer
A Rare Case of Aplastic Anemia Later in Life Won't Stop Me
I grew up in Louisiana - born in New Orleans and raised in Lafayette. I joined the Army, and went to Seattle and worked at Madigan General Hospital where I met my wife. I was then sent to Vietnam. After I returned, I worked for a bank in Seattle for 16 years, becoming a vice president and manager. I helped finance an auto auction as part of this job, and as a result, I fell in love with the car businesses. I was accepted for a Ford training program that lasted for two years at a Seattle Ford...