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.
Alani Diaz
Alani tells how he has become his own best advocate
“I never even had a cavity before I was diagnosed with PNH, plenty of denial later, I now live my life with PNH in it and don’t let PNH run my life!”
I lead an ordinary life, a healthy life. My name is Alani and this is my story.
I was born in Massachusetts, raised by my single mom. I grew up with my older brother and little sister. I did ok in school but my passion was for riding bikes and skateboards. The highlight of my childhood was racing BMX bikes every weekend. My mind enjoyed...
Ron Duncan
Ron Duncan, Texas Walk Committee
I last gave blood in December 2004. When I went again in March 2005, I was informed that I couldn't give and actually really needed a transfusion.
Eventually I was diagnosed with pure red cell aplasia, PRCA, a very rare condition where I don't make red blood cells. I struggled with transfusions and various medications for about three years. In April 2008, I found Dr. Maciejewski at the Cleveland Clinic and a doctor at the local medical school here in Dallas. They added an additional...
Jim Westmoreland
Jim Westmoreland’s Path to a Clinical Trial
James Westmoreland, age 78, of Cookeville, Tennessee, is a retired Associate Vice President for Information Technology Services from Tennessee Technological University. Here, he recounts his story of how his decision to attend a local blood drive eventually led to his participation in Phase 1 of a clinical trial study at the MD Anderson Cancer Center in Houston, Texas.
How did you first learn about a clinical trial?
Finding out I had a problem happened in an...
Kellie Day
Kellie Day, Debono Scholarship recipient
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...
Ndeye Anta Sene
"PNH is a Part of Me" - Anta Sene finds that acceptance leads to hope
My name is Ndeye Anta Sene. I am 22 years old and live in Maryland. I was born in Senegal, in West Africa and in December 2007 came to the United States by myself at age 16 due to medical issues.
My symptoms, including fatigue, shortness of breath, and dizziness, started at the age of 14 while still living in Senegal. I was admitted to a hospital for a month because the doctors could not determine a diagnosis. They finally came to the conclusion that I had severe anemia and the only...
Heather Putney
Heather Putney’s Trials (and Travels) with Aplastic Anemia
There is no shortage of milestones when you are healing following a bone marrow transplant. You have the inevitable counting of days; day 21: being discharged from the hospital; day 90: having fresh produce; day 142: spending the start of Thanksgiving by jogging a 5K, day 300: biking 50 miles with a custom BMT survivor jersey to raise awareness for marrow donation; day 365: my new first birthday and a goodbye to precautions and meds; day 380: returning to work as a health care provider rather...
Ashley Oakes
Ashley Oakes – Blessed to Have Her Son, Her Family, and Her Life
It has been two-and-a-half years since being diagnosed with aplastic anemia. In September 2010, my husband, Scott, and I moved home to Vancouver, British Columbia from Calgary, Alberta where we had been living for the previous three years. I was six months pregnant and so excited to be going back to the city where all our family lived to share this wonderful time with them. We moved into a little house a few blocks from my mom and settled in to await the arrival of our little one. A few weeks...
Kathryn Bauer
Retired MDS Patient Living Life to the Fullest Since Transplant
I retired from Dun & Bradstreet, after 35 years of working all over the US and Europe as a business analyst and Vice President of Operations and Data Acquisition. I was living the life I had always aspired to -- traveling, volunteering for a number of non-profit organizations, taking the occasional consulting job, enjoying a few classes at the local college, and just having fun.
Then, in August 2009, I had a blood test and it showed something was off with my white and red blood cells. I...
Ruth Cuadra
Long-term survivor and dedicated volunteer
2015 will mark the 17th anniversary of my victory over myelodysplastic syndrome (MDS). An unrelated-donor bone marrow transplant saved my life and cured me of the disease in 1998.
I was originally diagnosed with aplastic anemia, in 1996, when a routine checkup showed that my blood counts were at life-threateningly low levels. I was treated with the immunosuppressant called ATG and experienced some improvement, but could never get back to normal blood counts. Eventually I was found to have...
Chris Nein
Inspiring young survivors
Christopher Nein recently earned his fourth AA&MDSIF Scholarship award. The aplastic anemia survivor is attending Eastern Virginia Medical School in Norfolk, Virginia and was recently married. As part of his application for the 2012 scholarship program, Chris wrote the following personal letter to all children and youth currently struggling with bone marrow failure diseases.
In Chistopher's own words:
Friend and fellow fighter:
Most twenty-two year olds do not have vivid...