Stories of Hope

To better understand the impact of bone marrow failure, we recommend reading our illuminating human interest stories, told by the people 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.

Jeff Paccione

Jeff Paccione: “Don’t worry, I’m not going anywhere.” - a Patient's Story

On April 15, 2007, my husband Jeff, age 39, tucked our two and three year old boys into bed. He suddenly yelled down to me in a concerned voice, “Honey, my vision is slightly distorted, and it must be a migraine. I’m going to lay down for a bit.” I was not extremely concerned since Jeff had gotten migraines in the past. But the next day, the other eye was also adversely affected in the same way. We sent the boys to day care, and went to the eye doctor, who immediately referred Jeff to a...

Tyler Andrews

Tyler Andrews Strives to Find His Athletic Potential - a Patient's Story

Recovered Aplastic Anemia Patient Connects with Community Development and Professional Running I grew up in the Boston area, and it has been almost exactly 20 years since my diagnosis. I was diagnosed as a 6-year-old in January, 1997, at which point I was taken out of school for treatment. The problem first showed up as what my parents figured was a rash, but were actually petechiae. Upon further testing, my CBC revealed significantly abnormal results; after being referred on and diagnosed...

Briana Donis

Briana Donis Overcomes Aplastic Anemia Through Two Transplants - a Patient's Story

Homecoming queen and top student Briana Donis always wanted to go to the University of Texas at Austin. “I was having a pretty awesome year.  I was very well known at school and I had a boyfriend.”  She had just been accepted at the school of her choice when she noticed how really tired she was all the time. And then the bleeding started. Disease “When I would cut myself, like it would be just a little paper cut, I would fill up a napkin with blood. I thought it was really...

Denise Beauchemin

Denise Beauchemin - My Life is Making a Difference - a Patient's Story

Beginning September 2012, I just wasn’t feeling quite right. I was increasingly fatigued and there were some perplexing bleeding incidents, as well. After many months I experienced partial vision – just little areas of vision that were blank. Internal bleeding in the eyes was causing this, and my eye doctor knew it was serious and even thought it could be leukemia. Blood tests were done, and when my doctor saw the results he called and told me to go to the emergency room right away. My...

Ricky Smith, Jr.

Ricky Smith, Jr. Battles a One-Two Punch of Aplastic Anemia and PNH - a Patient's Story

29-year-old Ricky Smith, Jr. has had bone marrow failure disease for half of his life, beginning with aplastic anemia at the age of 14, followed by PNH when he was 23. It took doctors a year to get Ricky’s aplastic anemia under control. His wife Reyneisha puts it this way. “Not only did he question his parents and the doctors, he questioned God and said ‘Why do I have to go through this?’ He explained to me that if the disease was going to cost him his life, he’d rather be gone than deal with...

Emma

Solving Emma’s Diagnostic Mystery - a Patient's Story

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...

Rachel Ancer

South African Girl with PRCA Gets German Match - a Patient's Story

Our 8 year-old daughter Rachel was admitted to Groote Schuur Hospital in Cape Town, South Africa yesterday, March 6, to prepare for her bone marrow transplant. It is auspicious for us that she was admitted during Bone Marrow Failure Awareness Week. Two years ago we discovered Rachel has an extremely rare bone marrow failure condition known as pure red cell aplasia (PRCA). Her bone marrow has gone on strike and she’s not making red blood cells. What caused it remains a mystery, which has...

Jane Massey

Jane Massey’s Story - a Patient's Story

Although it sounds strange. I am beginning to believe that breast cancer possibly has saved my life. In October 2015, I was diagnosed with stage 2 lobular carcinoma of the breast. My cancer was found during my routine mammogram. I opted for a bi-lateral mastectomy and then had 33 radiation treatments in early 2016.  I saw my oncologist every month due to my treatment and she ran blood work every time. My numbers had been a little off for some time prior but nothing too worrisome. However, my...

Sara Massey

Sara Massey - a Patient's Story

My mom is a pharmacist and I currently attend the University of Missouri-Kansas City School of Pharmacy. When she was diagnosed with breast cancer last year, I was shocked and sad but I wasn’t scared. To me, breast cancer was one of the “normal” cancers. I remember the exhausting days and weeks following her surgery and radiation treatments, but we happily got to celebrate her return to health.  After a few short cancer-free months, doctors began to investigate “weird” blood levels. Mom would...

Dominique Hughes

SAA Patient Dominique Hughes Contributes to NIH Research - a Patient's Story

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...