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.
Kirby Harness
Surfer grounded by PNH Treatment but Thriving!
I was diagnosed with PNH fifteen years ago, at the age of 51. This is my story.
I grew up on the West Side of Los Angeles. Raised by a single parent, my mother was a strong woman of faith. My father, the eldest of twelve, died of a heart attack when I was about nine months old. Four of his six brothers, and a couple of my cousins died at an early age. My mother always said, “those Harness men have bad blood.” Little did I know what she meant at the time.
Aside from the scholastic team...
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...
Joshua Maliczowski
Update for Josh: A Change in Treatment is only a Little Unsettling
2021 Treatment update
I am still taking the medication ultomiris, however, in late 2020 I was notified by Alexion (the drug company that makes ultomiris) that the concentration of ultomiris would be changing in 2021. By sometime in 2021 the original concentration of ultomiris will be phased out and will no longer available. The new concentration I would begin getting is 100mg/ml formulation. This new concentration is infused at a different rate and actually cuts down my infusion time to about...
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...
Kristy Maliczowski
We Made It! – Kristy Shares her Perspective in January 2021
We made it to another treatment day without anyone in our family getting sick! The week leading to treatment day has become pretty worrisome for me. What if someone in our family gets sick with or is exposed to COVID? Josh will not be able to get his infusion within the treatment window and then what? The questions I never thought I'd have to wonder about. I used to dread treatment day because it was a reminder that Josh has Paroxysmal Nocturnal Hemoglobinuria (PNH), but today I celebrate that...
Danielle Sulyma
A Caregiver's Story: MDS Diagnosis Changes their Lives
I know my fiancé well. Even though he seemed to be healthy and his job kept him active, I knew it had been a long time since he had a medical physical, so I pushed him into an appointment.
Without symptoms, the doctor suggested routine blood work as a part of the physical. We were surprised that all his counts were low. The doctor decided to check again in a month, so I made sure that his diet was healthier and that he took vitamins, hoping that would correct any problem.
Because I’m a...