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.
Lisa Gosnay
Lisa: Finding the Light
Lisa loved her work.
As a Senior Teacher in the UK, she dedicated herself, her time, and her passion to her job. An average week saw her working 70 hours.
Following a beach holiday in the Canary Islands, she developed a strange rash on the top of her feet. A colleague urged her to go to the doctor.
The doctor suggested she was bleeding under the skin, sending her for blood work. The next day, she went to the lab and a few hours later received a call from her doctor: “You are seriously ill. ...
Meghin Kiernan
"I Consider Myself Lucky:" New Mom Meghin Can Live her Life Now
On October 24th, 2022 I received the phone call that would change my life. Enjoying a ten minute bubble bath, I initially ignored the vibrating phone along the tub's porcelain edge. My husband had recently embarked on an overseas business trip, and for the first time I was parenting as a single parent. Exhausted, my throat sore, I had just put my seven month old son to bed and wanted nothing more than to snuggle into my cozy bed and sleep. I never did get to sleep.
Exiting the tub, I noted a...
Dianne Witter
"Let's Roll:" What the Heroes of 9/11 can Teach us about Facing Blood Cancer
The morning of 9/11/01 was a doubly surreal experience for me. I was waiting for an appointment with my doctor at M. D. Anderson's Leukemia Center in Houston while chaos erupted in America. The waiting room was packed, as usual, with people at various stages of their own life-threatening events, and I was struck by the relative calm in this room compared to the state of disbelief and panic playing out on TVs throughout the country. I realized that each of us in that waiting room had already...
Marie-Eve and Milan
A Mother's Message of Courage: Marie-Eve Shares Milan's Story
My name is Marie-Eve. I’m the mother of 3 boys, Milan (17), Nando (14), and Kirill (12). In early 2021, I’d been noticing marks on my oldest son’s body — undeniably and inexplicably large bruises — as big as full moons. My mind would spin in a million different directions, trying to convince myself nothing was amiss. Milan kept telling me he was fine. “I’m okay, mom. Stop worrying.” Then, one morning, he left for the hockey rink, sopping up blood from his nose and gums, for no apparent reason...
Ashley Marie Brown
Aplastic Anemia Taught me to Nourish my Body and my Spirit
In Sept 2021, I had my stillborn son, Nolan. My blood count levels at that time were normal (250 platelets, Hemoglobin 10, good neutrophils). From September to April, I began supplements (not under the direction of a physician), increased my physical activity massively (including running long distances), and began eating healthier. I also drank more.
In April 2022, I began having menstrual cycle changes, vision changes, increased palpitations, and hearing my heartbeat in my ear. The...
David Atherfold
David's Journey - Grandfather Responds to Treatment for Aplastic Anemia
Most of my working life was associated with the printing industry. I was apprenticed to printing way back in 1962. I then worked as a printer and later as a teacher in vocational education at the School of Printing and Graphic Arts in Sydney, Australia. Over a period of forty odd years, I worked in close contact with a large variety of hydrocarbon-based solvents, a known cause of bone marrow failure conditions. In June 2004 at the age of 58, I took a voluntary redundancy. Eighteen months late...
Jenny Cape
Aplastic Anemia, Two Transplants, and Medical School: Jenny's Story
Two transplants later, Jenny is off to medical school!
An athlete since preschool, Jenny couldn’t understand the fatigue she’d been having. Only 10 minutes into a soccer game in high school, she had to stop. On an open-gym morning, she felt so horrible she passed out while she was walking to her car to drive home.
When Jenny’s dad came to get her, he took her directly to the pediatrician. There, the blood counts showed a red blood cell level of only 4.5, and her platelets were extremely...
Kami Murphy
"Sounds like a Fable" - Kami's Remarkable Journey through Aplastic Anemia
To her recent friends, her time fighting aplastic anemia “sounds like a fable,” Kami says.
Yet the disease, diagnosed in her freshman year at university, nearly killed her.
Like many patients, Kami’s first symptoms were fatigue and bruising. Then her menstrual cycle was so heavy that she says she hemorrhaged, waking up covered in blood. She passed out, so she accelerated her lab appointment. There she discovered her platelets were extremely depleted and her hemoglobin count was only 8....
Sarah Anders
Being Tired Isn't the Whole Story: Sarah's Post-Transplant Life
Sarah was diagnosed with Severe Aplastic Anemia in fall of 2015. Shortly after, she began antibody treatment at the NIH. When that did not work, she proceeded to bone marrow transplant in July of 2016. It has been over 5 years since her transplant. In her own words:
The word fatigue describes an exhaustion so severe it can only be medical. No one just randomly says, “I didn’t sleep well last night, I’m so fatigued.” It has to be an ongoing state, something that seeps into your bones, to really...
AnnaLeigh Whitfield
"You CAN beat this!" Jody Encourages other Parents with his Daughter's Story of Aplastic Anemia
Before AnnaLeigh got sick, she was a happy, energetic and healthy 4 year old with a huge imagination.
Then she got sick. Severe Aplastic Anemia.
It only took about 2 days to diagnose what was wrong with her, but that was just the beginning.
The first form of treatment was H-ATG with cyclosporine, to which she didn’t respond well to at all. It actually caused serum sickness and ended up being in the hospital for 250 days the first year. Her day-to-day life went from being a playful...