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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.

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...

Kirby Harness

Surfer grounded by PNH Treatment

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...
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