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.
Joshua Maliczowski
Undiagnosed for Years, Josh Finally Finds both a Diagnosis and a Treatment!
My diagnosis with Paroxysmal Nocturnal Hemoglobinuria (PNH) was a lot to handle, as is any diagnosis of any kind. I could talk forever in circles about the experience of my diagnosis and how it changed everything for me. For the beginning of my story, I will specifically focus on my medical diagnosis of PNH.
Here are the symptoms I was showing before my diagnosis: I was exhausted, all the time. I could not do any athletic activity without being incredibly shaky for hours after, sometimes...
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...
Drew Daniels
Pediatric Aplastic Anemia to Coast Guard Officer: Drew Daniels
My name is Drew Daniels, and as a child I suffered from Aplastic Anemia. When I was 8, I remember my parents finding bruising on me, but initially thinking it was from just being an active child. I have pretty spotty memories of most of the treatment, my mom wrote an article for AAMDSIF 6 or 7 years ago from the caregiver perspective which highlights my actual treatment much more accurately than I remember. I finished treatment when I was 10, but unfortunately most of my early memories are of...
Jane Biehl, Ph.D.
MY 12-YEAR BATTLE WITH MDS - By Jane Biehl PhD
I had an article published in 2017 by AAMDSIF and was asked to update everyone. I will briefly reiterate the first part of my journey and then move forward!
I was originally diagnosed in 2010 with Myelodysplastic Syndrome by an insensitive oncologist, who told me that I had this disease and the average life span for this type was 104 months. I had not even asked how long I would live. She was devoid of emotion and nasty. The room spun wildly as I grasped my friend’s hand. I couldn’t...
Jocelyn Boyer
“Everything is going to be okay:” Jocelyn’s Story of Aplastic Anemia, PNH, and Survivorship
Before diagnosis, Jocelyn’s life was normal, predictable. She was thriving her senior year in college, studying Public Relations. In 2008, she was working, volunteering, attending classes---all the normal activities for a 20-year-old.
But one day that changed. Extreme fatigue set in, making it difficult to walk a single flight of stairs. At first, she dismissed the fatigue to her rigorous schedule.
One Friday evening, the symptoms intensified. Jocelyn went to a local store’s grand opening...
Veronica Ruiz
How a Delay in Treatment nearly Cost her Life - Veronica's Story
Veronica learned that delaying treatment was not a good idea.
That delay nearly ended her life.
In 2018, Veronica was a busy mom, working full time, leaving the house at 5:30 a.m., returning at 5:30 p.m. She stayed healthy by working and staying active. She is a busy mom of two young children, and all the normal activities of modern life. One day, she thought she caught a bad flu, so she stayed home all week, unusual for her. When she returned to work the following Monday, she was exhausted...
Ashley Numbers
Ashley and Alayna: A Mother's Story
September 16 through December 20 will stand out in Ashley’s mind.
Forever.
These are the days she spent in the hospital with her feisty three-year-old, Alayna, for conditioning and bone marrow transplant.
The summer of 2019 was already big with a wedding to plan. The toddler and her baby brother were enjoying everything that small ones do, including riding dirt bikes with Daddy.
When an unusual rash showed up, Dad took her to the pediatrician’s office. Although the physician who saw Alayna...
Mark
Mark lives symptom-free with MDS, but it's still "like an albatross"
Mark had no symptoms common to bone marrow failure patients.
Not one.
But an MRI for back pain revealed some unusual markers. A bone scan and blood work still didn’t reveal an explanation. Thankfully, his internal medicine physician ordered a bone marrow biopsy. After waiting and waiting for the results, Mark received the diagnosis: Myelodysplastic Syndromes with 5q deletion. Later testing showed the JAK2 mutation, which he found even more alarming.
Mark remembers the call from his...