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.
Heather Gouldsmith
Gouldsmith Family Pulls Together for Gabby
In June 2011, my daughter Gabby was seven, and we had just relocated from Las Vegas to Reno, Nevada. She seemed tired and had alarming bruises on her shins. She also had a persistent ear infection and I noticed red dots (petechiae) on her shoulders.
I’m a nurse and work for a pediatrician, so seeing all this in a short time set off alarms for me. I took Gabby to Dr. Robin White's pediatric practice (where I work) for further examination. Dr. White became very involved in Gabby's care and even...
Judi Wilkinson
I'm Like You: Judi Wilkinson
Judi Wilkinson of Ormond Beach, Florida, has worked as a mortgage underwriter, 911 operator and auto racing team manager. She was accustomed to handling tough situations, as well as emergencies.
But when the strong and active mother of two received her aplastic anemia diagnosis 14 years ago, she was just as stunned as every other bone marrow failure patient. "It scared the daylights out of me."
Judi recalls being in the best shape of her life since high school when, out of the blue, she felt...
Jeff Paccione
“Don’t worry, I’m not going anywhere.”
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...
Briana Donis
I'm Like You: Briana Donis
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.
“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 weird.”
It was really severe...
Denise Beauchemin
My Life is Making a Difference
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.
I'm Like You: Ricky Smith, Jr.
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.
"I just wanted to live the normal life of a teenager," said Ricky. But it just wasn’t meant to be. When he was taken to the hospital to find out why he’d become so weak, he passed out because he had so little blood in his body.
The teenager who’d been so excited about high school and sports became angry and depressed as he...
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...