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.
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...
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...