Local survivor of rare disease earns third scholarship
FOR IMMEDIATE RELEASE - June 18, 2013
Rockville, MD - The Aplastic Anemia and MDS International Foundation (AA&MDSIF) has awarded Island Lake resident and aplastic anemia survivor Kylene Ogborn a $1000 Matthew Debono Memorial Scholarship for the 2013-2014 school year. This fall, Kylene will be a senior at Elmhurst College.
Matthew Debono was diagnosed in 1984 with severe aplastic anemia, a rare life-threatening disease that destroyed his body's ability to produce red and white blood cells as well as platelets, when he was a freshman at Wabash College in Indiana. Matthew died from complications of the disease 18 months after diagnosis. According to his parents, Sally and Manny Debono of Indianapolis, “Matthew always regretted not being able to receive a college education so he and his brother conceived of a scholarship to help students who are similarly challenged by bone marrow failure disease.”
The Debono Family established the Matthew Debono Memorial Scholarship Program in 1986. It has now funded 68 scholarships since its inception. This marks the second year the family has partnered with the Aplastic Anemia and MDS International Foundation, a non-profit dedicated to supporting patients, families and caregivers affected by bone marrow failure diseases such as aplastic anemia, MDS (myelodysplastic syndromes) and PNH (paroxysmal nocturnal hemoglobinuria). Founded in 1983, the organization is a recognized and respected leader in patient education, patient and family support, and research.
“We congratulate Kylene on her outstanding application and academic achievements,” said John Huber, AA&MDSIF executive director. “Most of all, we recognize the enormous effort and courage involved in overcoming bone marrow failure disease. She has every reason to be proud.”
Diagnosed with both aplastic anemia and PNH in 2009, Kylene continues to battle and work towards her dream of becoming a nurse, specializing in hematolgy/oncology. As a three-time AA&MDSIF scholarship recipient, she has matured as a person and has become a tremendous self-advocate learning about her diseases, and working with physicians. An excellent student who has compiled a 3.67 GPA while taking a difficult curriculum, Kylene says she is “thriving and loving everything she's doing” in her future field. Kylene is a courageous young lady who is grateful for the opportunities she has been given. Her advice to patients is to “cherish your life and all of its small moments, and let go of all that you cannot control.”
“On the day I was diagnosed with PNH, my family was getting together for a long planned family dinner,” says Kylene. “Before we left that evening, I asked my mom, and through her the rest of my family, to not discuss anything regarding the diagnosis over dinner. As we sat eating our meal, there was an undeniable hovering of emotion - of concern and curiosity. It dawned on me then that my family was my biggest support system. Of course, I knew this before, but had not realized it until that moment. They were all being so respectful in doing what I had asked and what they believed was best for me, even if that meant being left in the dark. I did find myself telling my grandmother what happened early that day, allowing the flood of questions, and open line of communication, to begin.”
“This type of family support and open communication is a key aspect in facing these conditions,” she continues. “Allowing yourself to take the time to explain what is happening to those who love you will be the best therapy you will find. Finding those who support you and want to take on your feelings will be one of the most important things you can do in life after diagnosis. It is through them that a major portion of healing begins. Another core component that gave me strength early on, and to this day still gives me strength, is my mother's dedication to educating herself on my conditions. I always joke and say my illness is her hobby, but in all seriousness, she knows the importance of education and its positive affects for both of us. The last piece of critical advice I can provide is to find a doctor in whom you can build a solid and trusting relationship. You need a doctor who is willing to learn and consult with others. These medical conditions are rare, particularly PNH in pediatrics, and finding a physician who is well versed in the condition is even more of a rare find. If you find a doctor who wants to learn about your condition, and will go to endless lengths to help you, then that is the individual who you should place your trust in.”
Aplastic anemia, MDS, and PNH are rare life-threatening bone marrow failure diseases that can strike anyone. Bone marrow contains special cells called stem cells which grow and mature into the three types of blood cells: red blood cells which carry oxygen to tissues and organs; white blood cells which help fight disease and infections; and platelets which help blood clot to stop bleeding. When the bone marrow fails to keep up with the body's needs and doesn't produce enough red cells, white cells or platelets; or when those blood cells that are produced are damaged or defective, bone marrow failure occurs causing one or a combination of these diseases. There is no perfect cure for these diseases although many patients are successfully treated through drug therapy or a bone marrow transplant. Please visit the web site (www.AAMDS.org) to learn more about bone marrow failure diseases or the Matthew Debono Memorial Scholarship Program.