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.
Bridget Daw
Aplastic Anemia and Treatment-Related Complications Influence Career Choice
In December 1992, I was an 8-year-old, halfway through second grade, when strep throat and a urinary tract infection just wouldn’t go away. A late-night trip to the emergency room revealed dangerously low levels of platelets, which explained this and the severe bruising all over my body and rashes on my joints. My platelets were under 2,000 and I was supposed to have 250,000.
I was sent to Virginia Commonwealth University Medical Center (VCU) in Richmond, Virginia that night and a few days...
John Vasquez, Part 1
In Treatment at NIH
Texas native John Vasquez led an active life until he started to experience unusual symptoms in 2015, including an incidence of numbness on one side of his body. The 20-year-old was soon diagnosed with aplastic anemia.
He sought local treatment and was started on immunosuppressive therapy, causing him to suffer the full range of side effects – fever, chills, nausea and serum sickness, which includes joint and muscle pain. Rather than wait for his doctors’ next steps, John decided to contact...
John Vasquez, Part 2
Updates from John and Isabella!
Part 1
In late August 2017, AAMDSIF paid a visit to NIH patient John Vasquez and his sister/caregiver Isabella, several weeks after his stem cell transplant for severe aplastic anemia. Here's what each had to say about what they're doing and how they're feeling. If all goes well, they will be heading back home to San Antonio by February of next year. We’ll be updating their story here each month!
John Vasquez
Stem cell transplant patient
How are you feeling now, about...
Emma's Story, Part 2
As Patient Advocate, Emma Makes New Friends
When Emma was still being seen at the NIH twice a week, we were talking with her physician’s assistant about her t-shirt fundraiser and her Facebook group. After hearing what Emma was doing with these activities, they asked her to be their new pediatric patient advocate, helping newer pediatric patients with advice on how to cope with treatments. This seemed to be another way we could help.
Within a few weeks there was a new patient and we were asked to visit with the family on site at NIH....
Emma's Story, Part 3
A Mother and Daughter Awareness-Building Team Get to Work
“Emma was active in raising awareness for bone marrow failure even before her arrival at NIH.” – Lydia Seiders
I knew from prior experience with advocacy for other Illnesses, that “t-shirt advocacy” really works – they are great conversation starters. After I had read and re-read AAMDSIF’s patient guide, I felt ready to begin advocacy for aplastic anemia. I knew I could send anyone to their website for any questions I couldn't answer.
Getting started with T-shirts...
Jill Minden
My Encounter with Aplastic Anemia
In 2007, when I was 25 years old, I started to get winded going up a flight of stairs. I also began having two hour long nosebleeds, and I knew something was wrong. I had my bloodwork checked and shortly after my doctor told me to go to the hospital right away because my blood counts were extremely low. I had no idea what that meant at the time, and wasn’t overly alarmed. Two weeks and two different hospitals later, I was diagnosed with something I had never heard of, severe aplastic anemia....
Tyler Andrews
I'm Like You: Tyler Andrews
Tyler Andrews has been passionate about running for most of his life. The 26-year-old turned it into his profession and has competed all over the world.
But the biggest competition he ever faced was at the tender age of six, when he was confronted with aplastic anemia. He was in first grade when he was horsing around one day with his older brother and fell down a flight of stairs. It was the luckiest tumble he ever took, leading to the enduring family joke that his brother saved his life by...
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...