Stories of Hope | Page 2 | Aplastic Anemia and MDS International Foundation (AAMDSIF) Return to top.

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.

Ricky Smith, Jr.

I'm Like You: Ricky Smith, Jr.

29-year-old Ricky Smith, Jr. has had bone marrow failure disease for half of his life, beginning with aplastic anemia at the age of 14, followed by PNH when he was 23. "I just wanted to live the normal life of a teenager," said Ricky. But it just wasn’t meant to be. When he was taken to the hospital to find out why he’d become so weak, he passed out because he had so little blood in his body. The teenager who’d been so excited about high school and sports became angry and depressed as he...

Joe Ellenberger

Fighting PNH While Helping PNH Patients

I’m 31-years-old, and I was diagnosed with PNH in 2009 when I was 24. I am generally athletic, and in college I was a wrestler. I knew what I could expect when training, competing, and recovering from competition. I transitioned from wresting to mixed martial arts (MMA) in 2008. Naturally, when I started that, I wanted to be sure that my training and recovery were the best they could be. I was 9-0 as a Professional in MMA and had my tenth fight in July 2009.  About halfway through training for...

Steven Coffin

Biology Teacher Battles PNH

Steve Coffin considers himself lucky. Diagnosed with PNH in 2015, he is  grateful that he has responded well to eculizumab (Soliris®) treatment. “I’m incredibly fortunate,” he said. “It’s doing exactly what it’s supposed to do.” Steve, a 34-year-old avid runner, always lived an active lifestyle, but he had also sometimes experienced unexplained issues with fatigue over the years. In February, after a bout with the flu, he woke up at four in the morning with severe abdominal pains. “Within...

Jake Sanborn

“Mom, it’s too late. I’m dying.”

My husband Rick and I knew Jake was not feeling well. He kept denying it and saying he was fine. A bloody nose scared me, and then I remembered how my brother-in-law had them as a child and thought it was hereditary. Then his high school said he had another. He began to ask us if he looked pale. We said that he did. He also was coughing and seemed lethargic. We encouraged him to go to the doctor, but he said he was fine. It must have been divine intervention, because when his truck broke down...

Mariah McHenry

BMT Meant 'It Could Finally Be Over '

At the last race of my high school cross country career, I stood on the starting line with one hundred other girls and repeated only one thought - “just finish”. I didn’t think about winning. I didn’t think about beating any records or trying to beat anyone, for that matter. I just wanted to finish. I wanted to look back and know that I did this one thing for me. I wanted to know that I did something that scared me, something that no one expected me to do, and something that I wasn’t even sure...

Gloria Winter

Disease Won't Run My Life

My odyssey with bone marrow failure diseases began on Mother’s Day, 2007 when I found a deer tick embedded in my upper arm.  Three weeks later, a positive Lyme’s disease test qualified me for ten days of doxycycline (an antibiotic).  About six or seven days into my treatment, I was feeling worse, and called my primary care physician. One day later, after receiving a blood test, my physician called and instructed me to have someone drive me immediately to the local emergency room for a blood...

Melanie Marquez

Hope in Action

This year marks the 25th year I have survived paroxysmal nocturnal hemoglobinuria.  (PNH)  How fortunate and blessed I feel, that I can say half my life I have survived my PNH diagnosis.  Taking a look back at how my journey started -- just having completed college and newly married -- the first thing I did after being diagnosed was to seek out the support of other patients.  I found help through the National Organization for Rare Disorders (NORD) who mailed me a list of about ten patients...

Ellen O. Kalinosky

Biting into the Elephant

I believe that a story is the shortest distance between two people. While this is my story, it is not just mine, and I did not do any of this alone. In April 1983, my husband Joe and I were 25 years old and attending to the required pre-marital blood work. Next thing we knew, we were sitting in a doctor’s office because my blood counts were abnormally low. They told us there was something wrong, but they didn’t know what it was. Referring us to a hematologist/oncologist, we were told I would...

Heather Vega

Doctor Helps Determine Her Own Aplastic Anemia and PNH Diagnosis

“I was fortunate to have a medical background, because with it I was able to help diagnose myself with aplastic anemia and PNH,” says Dr. Heather Vega. A Pittsburgh native, she is a family physician living in Bridgeville, Pennsylvania who received her medical degree from Lake Erie College of Osteopathic Medicine. “I was 30 years old and in a hospital-based practice 12 years ago when I noticed a bruise on my leg,” says Vega.  “It was so strange because a few nights prior, I had just had a...

Emma Pritchett

A Story of Hope

“Faith, hope and endurance are imperative to living a life full of possibilities with PNH,” says Emma Pritchett, who has lived with paroxysmal nocturnal hemoglobinuria for 20 years. “The diagnosis was a shock because the disease is so rare.”  Emma and her husband Dennis, a scheduling manager for Carrier Transicold United Technologies, live in Watkinsville, Georgia.  They were married in 1993 and were eager to start their family.  They were elated when Emma became pregnant but soon noticed...