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Stories of Hope

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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.

Krissy Kobata

Confronting Challenges in Finding Matches for Multiracial Patients

34-year-old Krissy Kobata is a passionate patient and advocate/activist. Diagnosed in 2008 with MDS, she’s the epitome of resilience as she has waited for years to find a matched donor. She has devoted this time to helping other patients by enlarging the Be The Match® bone marrow registry. She’s directed numerous bone marrow drives and fundraisers, bringing thousands of new DNA donors to the national registry. However, her own path to finding a donor has been challenging and frustrating. Her...

John Vasquez, Part 2

Updates from John and Isabella!

Part 1 In late August 2017, AAMDSIF paid a visit to NIH patient John Vasquez and his sister/caregiver Isabella, several weeks after his stem cell transplant for severe aplastic anemia. Here's what each had to say about what they're doing and how they're feeling. If all goes well, they will be heading back home to San Antonio by February of next year. We’ll be updating their story here each month!   John Vasquez Stem cell transplant patient How are you feeling now, about...

Emma's Story, Part 2

As Patient Advocate, Emma Makes New Friends

When Emma was still being seen at the NIH twice a week, we were talking with her physician’s assistant about her t-shirt fundraiser and her Facebook group. After hearing what Emma was doing with these activities, they asked her to be their new pediatric patient advocate, helping newer pediatric patients with advice on how to cope with treatments. This seemed to be another way we could help. Within a few weeks there was a new patient and we were asked to visit with the family on site at NIH....

Barry Gore

I'm Like You: Barry Gore

As a young man, Barry Gore was a top-40 celebrity disc jockey, complete with an adoring fan club in the Greater Boston area. But like most first jobs, it lost its luster and he settled into sales and marketing while getting his MBA. He became the owner of a prosperous machine manufacturing business that his son now runs. But when he was still in his fifties, a family history of heart disease finally caught up with him. Barry’s internist directed him to a cardiologist, suspicious that his...

Emma's Story, Part 3

A Mother and Daughter Awareness-Building Team Get to Work

“Emma was active in raising awareness for bone marrow failure even before her arrival at NIH.” – Lydia Seiders I knew from prior experience with advocacy for other Illnesses, that “t-shirt advocacy” really works – they are great conversation starters. After I had read and re-read AAMDSIF’s patient guide, I felt ready to begin advocacy for aplastic anemia. I knew I could send anyone to their website for any questions I couldn't answer. Getting started with T-shirts...

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....

Brandi Lewis

I'm Like You: Brandi Lewis

Brandi was hooked on acting from the time she was three and played a munchkin in the Wizard of Oz. She eventually sidelined her first love to study political science at the University of Northern Alabama. In 2011, she made history there as the first black Miss UNA. Her next coveted role was as a college intern on Capitol Hill in Washington, D.C. But by far, the hardest part she ever had to undertake was that of a bone marrow failure patient. “I have PNH. I was previously diagnosed with...

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...

Tyler Andrews

I'm Like You: Tyler Andrews

Tyler Andrews has been passionate about running for most of his life. The 26-year-old turned it into his profession and has competed all over the world. But the biggest competition he ever faced was at the tender age of six, when he was confronted with aplastic anemia. He was in first grade when he was horsing around one day with his older brother and fell down a flight of stairs. It was the luckiest tumble he ever took, leading to the enduring family joke that his brother saved his life by...

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...