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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.

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...

Stefania Erazo

Fighting for a Transplant : Stefania conquers Aplastic Anemia and PNH ~ Stefania demuestra su VERDADERA fuerza

Hi! My name is Stefania, I am 31 years old, and I am from Ecuador. My life changed in July 2018 when I was diagnosed with very severe aplastic anemia. I had symptoms for 5 months but I ignored them due to my schedule --- I worked two jobs and I was finishing university. One day I decided to have a CBC (Complete Blood Count), but I was surprised when they called me to go to the hospital emergency room. My general doctor (who is an internist) immediately called the person who became my...

Ashley and Alayna Numbers

Update on Alayna: Loving Kindergarten, but Mom still worries

Alayna is doing all the normal activities for a child her age.  Learning to read, making many friends, and taking gymnastics are parts of ordinary life for kindergarteners.  She’s looking forward to soccer and more sports when pandemic life eases. Few signs remain that she battled aplastic anemia two years ago. Yet Alayna’s mom still worries.  She asks, “Where did that bruise come from?” each time she notices even one small bruise.  Parents of bone marrow failure patients understand this worry...

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...
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