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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.

Jill Minden

My Encounter with Aplastic Anemia

In 2007, when I was 25 years old, I started to get winded going up a flight of stairs. I also began having two hour long nosebleeds, and I knew something was wrong. I had my bloodwork checked and shortly after my doctor told me to go to the hospital right away because my blood counts were extremely low. I had no idea what that meant at the time, and wasn’t overly alarmed. Two weeks and two different hospitals later, I was diagnosed with something I had never heard of, severe aplastic anemia....

Shauna McMillan

Alaskan Goes Home for Treatment and a Fresh Start

I tell people I'm unique - almost one of a kind. I am 40 years old and have recently been diagnosed with a rare type of MDS having an unusual deletion 12q cytogenetic abnormality, known MDS 12q (-), or MDS 12q minus.  I was diagnosed in February of 2015 at age 38, however my health struggles began several years before that. I had been living in Alaska for nearly twenty-five years. In 2008, I was diagnosed with lymphocytic colitis (also a rare disease for someone of my age). I was referred to a...

Heather Gouldsmith

Gouldsmith Family Pulls Together for Gabby

In June 2011, my daughter Gabby was seven, and we had just relocated from Las Vegas to Reno, Nevada. She seemed tired and had alarming bruises on her shins. She also had a persistent ear infection and I noticed red dots (petechiae) on her shoulders. I’m a nurse and work for a pediatrician, so seeing all this in a short time set off alarms for me. I took Gabby to Dr. Robin White's pediatric practice (where I work) for further examination. Dr. White became very involved in Gabby's care and even...

Jeff Paccione

“Don’t worry, I’m not going anywhere.”

On April 15, 2007, my husband Jeff, age 39, tucked our two and three year old boys into bed. He suddenly yelled down to me in a concerned voice, “Honey, my vision is slightly distorted, and it must be a migraine. I’m going to lay down for a bit.” I was not extremely concerned since Jeff had gotten migraines in the past. But the next day, the other eye was also adversely affected in the same way. We sent the boys to day care, and went to the eye doctor, who immediately referred Jeff to a...

Denise Beauchemin

My Life is Making a Difference

Beginning September 2012, I just wasn’t feeling quite right. I was increasingly fatigued and there were some perplexing bleeding incidents, as well. After many months I experienced partial vision – just little areas of vision that were blank. Internal bleeding in the eyes was causing this, and my eye doctor knew it was serious and even thought it could be leukemia. Blood tests were done, and when my doctor saw the results he called and told me to go to the emergency room right away. My...

Thomas Howlett

2014 Matthew Debono Scholarship Winner Thomas Howlett

Thomas is thankful he has a future. He wasn’t so sure when in March 2011 he was told as a high school freshman that “he wouldn’t be playing paintball for a while.” Thomas was diagnosed with MDS that quickly progressed into acute myeloid leukemia. His family was told that his only chance for survival was a bone marrow transplant. As an only child, the doctors had to find an unrelated match and they were fortunate to find a 24-year-old female from Minnesota who saved Thomas’s life. Thomas and...

Annette Lysan

2014 Matthew Debono Scholarship Winner Annette Lysan

In March, Annette had the honor of singing a solo for her high school senior show. She chose to sing “I Was Here”, a song recorded by the group Lady Antebellum and others. The lyrics for the chorus start with “I wanna do something that matters – say something different – something that sets the whole world on its ear – I wanna do something better with the time I’ve been given.” She considers it her personal anthem. Nineteen-year-old Annette has overcome several obstacles since she was...

Kellie Day

2013 Matthew Debono Scholarship Winner Kellie Day

Kellie was diagnosed with aplastic anemia in March 2005 when she was eleven years old. After two years of unsuccessful treatment, she was diagnosed with a second disease: PNH. Fortunately, she was able to receive a life-saving bone marrow transplant from her brother at St. Jude Children’s Research Hospital. This fall, Kellie will continue her undergraduate studies at Carson-Newman University, in her home state of Tennessee, where she will begin her sophomore year. She is pursuing a degree in...

Emma's Story, Part 1

Solving a Diagnostic Mystery

In January 2016, my 9 year-old daughter Emma turned yellow. After seeing her regular doctor, we were sent straight to the hospital. They found that her liver enzymes were extremely elevated and sent us to a second hospital. After extensive blood panels and scans, they still couldn’t determine the cause of Emma’s liver inflammation, and so the process to find her a new liver began. We returned home because of signs that Emma was doing better, but we had to follow a very stringent regimen that...

Rachel Ancer

South African Girl with PRCA Gets German Match

Our 8 year-old daughter Rachel was admitted to Groote Schuur Hospital in Cape Town, South Africa yesterday, March 6, to prepare for her bone marrow transplant. It is auspicious for us that she was admitted during Bone Marrow Failure Awareness Week. Two years ago we discovered Rachel has an extremely rare bone marrow failure condition known as pure red cell aplasia (PRCA). Her bone marrow has gone on strike and she’s not making red blood cells. What caused it remains a mystery, which has...
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