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.
Kellie Day
2013 Matthew Debono Scholarship Winner Kellie Day
Kellie was diagnosed with aplastic anemia in March 2005 when she was eleven years old. After two years of unsuccessful treatment, she was diagnosed with a second disease: PNH. Fortunately, she was able to receive a life-saving bone marrow transplant from her brother at St. Jude Children’s Research Hospital. This fall, Kellie will continue her undergraduate studies at Carson-Newman University, in her home state of Tennessee, where she will begin her sophomore year. She is pursuing a degree in...
Emma's Story, Part 1
Solving a Diagnostic Mystery
In January 2016, my 9 year-old daughter Emma turned yellow. After seeing her regular doctor, we were sent straight to the hospital. They found that her liver enzymes were extremely elevated and sent us to a second hospital. After extensive blood panels and scans, they still couldn’t determine the cause of Emma’s liver inflammation, and so the process to find her a new liver began.
We returned home because of signs that Emma was doing better, but we had to follow a very stringent regimen that...
Anna Sobon
I'm Like You: Anna Sobon
19-year-old Anna Sobon had been a typical college sophomore, active and full of plans about making her dreams come true.
When she began to get increasingly tired, she thought it was due to her hectic schedule or maybe some lingering after-effects of her bout with mononucleosis the previous summer. Even as her strength was dwindling, Anna stayed determined to keep up with her daily routines while she waited for her symptoms to simply go away.
It turns out that Anna had aplastic anemia. Her...
Dominique Hughes
SAA Patient Contributes to NIH Research
I was 19 years old when I found out that I had low blood counts. At this time I was just starting college and also working three different jobs. I was having extreme stomach pains and abnormal periods. I went and saw my gynecologist and routine tests showed my low blood counts. I was then sent to the local hematologist who did my very first bone marrow biopsy. When the results came back, he said that he had never seen a biopsy that showed so much inflammation and didn’t know what to do at that...
Brian Anderson
Anderson Family Pulls Together to Create Awareness for Aplastic Anemia
After Liviya’s diagnosis of severe aplastic anemia, my wife Rebekah and I wanted to contribute to bringing awareness to this potentially fatal disease, doing things that can help find a cure. First, we set up an ongoing annual blood drive now in its sixth year that is facilitated by the American Red Cross.
Apart from what happened to Liviya, I had a particular motivation to become as involved as I could be. I’m connected to the biomedical research field as part of the lab animal industry -- I...
Mary Swift
Battling Aplastic Anemia, Seeking Information
At the age of 3, I became ill with a rare blood disorder. I was bruising easily, and my platelet count was dangerously low. I was diagnosed to have ITP, had my spleen removed, and thought I was cured. However, my disease was either dormant or morphing into something else. My symptoms recurred with pregnancy, and after my second child was born, my disease was never dormant again. In 1993, my wonderful doctor was perplexed - whatever I had looked halfway like aplastic anemia AND halfway like...
Liviya Anderson
Horse ATG Saves Young Equestrian
Aplastic anemia is known to most often strike children between ages 6 and 16, and as fate would have it, Liviya’s troubles became evident right on her sixth birthday. Clearly, this had started earlier but we didn’t know about it. The doctors didn’t know what was wrong with her. One possibility was leukemia, but she was later correctly diagnosed with severe aplastic anemia and had the blood counts to support that classification.
Liviya immediately began receiving blood and platelet transfusions...
Sue Gabriele
My Son's Aplastic Anemia
My son Jamie was a very sick child. He was in full-time daycare at the age of 12 months, so he caught every cold and infection imaginable. He’d be on one antibiotic and then need another due to a secondary infection. He had mono, severe flus and ear, throat and other infections.
When he was 10, we thought he had heart problems because he became winded very easily. We took him to the doctor who referred us to a cardiologist. Jamie was diagnosed as anemic and put on iron pills. He seemed to...
John Vasquez
I’m working through aplastic anemia – my son helps me keep focused.
My aplastic anemia diagnosis was delivered on September 15, 2015 when I was 20. I was always quite active but was finding that I was fatigued, sleeping a lot, and then my gums started bleeding. I hoped this would stop, but that didn’t happen. Finally, when I was attending a local football game, one side of my body went numb.
I went to North Central Baptist hospital, and when the blood work results came in the doctor said ‘I am amazed that you were able to even walk in here.’ All of my blood...
Peggy Crosco
Shares her 11-year-old daughter's story
Brianna had always been a healthy young girl. We initially noticed some rather minor things with her but did not know at first how serious they were. She had low-grade fevers that went away during the day, but came back in the evening morning and there was her first-ever nosebleed. She missed school for a few days, so we saw her doctor. There is also a clotting disorder that run in our family – so I also wanted her to be checked for this because she had reached age where this should happen.
So...