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.
Debra O'Neal
"I Chose Life" - Debra Reflects on Three Years of Challenges with Aplastic Anemia
“Your blood counts are nearly nonexistent,” the doctor said.
Before this moment, Debra considered herself to be generally healthy, just tiring easily. She assumed the cause was the big project at work on top of a host of family and volunteer activities, or perhaps issues with her blood pressure. It was autumn of 2017.
She decided to checked out at the urgent care thinking they would prescribe some pill and she would be ok. Debra’s EKG was normal, but the blood work showed deficits of all...
Sandra Barnes
Sandy's Long, Hard, Road
I was diagnosed with Severe Aplastic Anemia on February 1, 2011, just 10 days after being in a car accident and getting staples in my head. This couldn’t have come at a worse time because I was in my final semester at Central Connecticut State University.
Before my diagnosis, I noticed a rash all over my legs (which I later learned was Petechia), and weight loss. I lost 17 pounds in 10 days, but I thought it was part of “biggest loser challenge” at work. I went to a walk-in clinic because I...
Hailey Texeira
Pack your Bags and Head to the Hospital - Hailey's Story
“You will need to pack your bags and head to Children’s Hospital, we think it’s leukemia.”
Only a few days after a Complete Blood Count, Christy, Hailey's mom, heard these words from Hailey’s doctor. Hailey had just started kindergarten.
At summer dance camp, Hailey won the award for “Most Tired.” That puzzled her mom. As kindergarten progressed, Christy noticed the fatigue. She assumed that kindergarten must be exhausting for children. Christmas was approaching when she noticed Hailey’s...
Nick Karavite
Life Interrupted – Nick’s Fight Against Aplastic Anemia
Here is Nick's story, as told by his mom, Pamela Karavite
At 13, Nick was an active teenaged boy. He played on a summer basketball team, and two baseball teams. I had seen bruises on his arms and legs, but they were typical for a teen boy that plays hard. Nick had just pitched his first no-hitter, and lethargically played in a couple of basketball games two days later. It was odd that he seemed so tired, but it was summer, the gym had no air-conditioning, and all the boys seemed tired. We...
Marianna De Leon
Severe Aplastic Anemia and PNH Diagnoses Came out of Nowhere - Marianna's Story
As a typical community college student, Mariana was busy. Classes, studying, day trips, all were part of her life. Yet during one shower, she dropped to the floor, suddenly dizzy. A few weeks later she would be out of breath, with unusual bruises on her skin.
At the end of the semester, she fainted in the grocery store while on vacation. Her parents dropped everything to drive the miles in a hurry, returning to an appointment with her family physician. Not yet diagnosed, she went to the first...
Alayna, daughter of Ashley
Update on Miss Alayna!
Alayna was a toddler when she was diagnosed with severe aplastic anemia. The previous story described the journey of diagnosis and treatment with a bone marrow transplant.
Today, Alayna is attending preschool, three days a week. She has had no major “hiccups,” her mom said, after the transplant in September 2019. She’s even doing so well, a year later, that she doesn’t need any more post-transplant biopsies!
When does a mom quit worrying? Alayna’s mom, Ashley, continues to worry, especially...
Stacy Bravo
Stacy's Aplastic Anemia Journey Part 3: Disappointing Results from First Treatment
Since treatment in July 2019, I have still been transfusion-dependent, receiving both blood and platelets. I get so short of breath when my blood is low. I really hate this disease. Because I’m still transfusion-dependent, I go back and forth for labs, doctor’s appointments, and transfusions.
In September, I started having different problems. I was not feeling well. I kept feeling my heart beating so hard I could not get up to walk a few steps to my kitchen or to my bathroom. I would get...
Mychaela Lovelace
Mychaela Dances Again, Thanks to her Mother's Advocacy
My name is Mychaela Lovelace. I had been a healthy five-year-old child until one day, when I came home, my mother noticed red dots and bruises on my body. Because she worked in the medical field, she was very concerned. She took me to the doctor, but my pediatrician wasn’t on in the office that day. The doctor I didn’t know said that I was just playing too hard and the dots and bruises were just a rash.
Over the next two weeks, the symptoms started to get worse with nosebleeds at night and red...
Behnoush Babzani
From Crisis to Career: Behnoush Babzani Triumphs over Aplastic Anemia
Aplastic Anemia led to her career – Behnoush’s story
At 12-years-old, Behnoush was diagnosed with aplastic anemia. Her therapies were the typical ATG and Cyclosporine, and she responded well.
But when she was a freshman in college, pancake-sized bruises appeared. She attributed the extreme fatigue to normal, active, college life. She was so exhausted she’d fall asleep in her classes, much to her surprise. Behnoush, out of fear of having to deal with these familiar symptoms, ignored and hid...
Braeden Hahn
Community Rallied around Braeden's Family as he Fought Aplastic Anemia --- Now Family "Pays it Forward"
“Hey, Braeden, we need to go.”
Little did 12-year-old Braden understand that he was headed towards hospital admission.
Earlier that day, Braden nearly passed out on the basketball court. He was a happy, athletic child, who excelled at several sports. His mom, Becki, took him for blood work.
Later, Braeden’s parents heard from the doctor’s office: take him to the Emergency Department now. That’s when Braeden’s dad came to pick him up from his friend’s house, where he’d been playing...