Fourteen student survivors of bone marrow failure diseases have been awarded Matthew Debono Memorial Scholarships for the 2014-2015 school year. The scholarships, which range from $1,000 to $2,000, are awarded annually and are funded by the family and friends of Matthew Debono, who died in 1986 from aplastic anemia.
$18,000 was awarded to recipients hailing from 12 states. At least twelve of the recipients plan to work in the medical field, studying to be physicians, nurses, and medical technologists. They have been inspired by their personal experiences battling these diseases. Like Matthew Debono, most have fought or are still fighting aplastic anemia. Others have also been affected by PNH. They have survived difficult treatments for their disease and through their own determination and hard work have positioned themselves to attend college and follow their dreams.
Read more about the Matthew Debono Memorial Scholarship Fund.
Christina’s life has come full circle. In 2001, when she was nine years old, Christina was diagnosed with aplastic anemia. Her parents brought her to the National Institutes of Health (NIH) where she received successful immunosuppressive treatment while enrolled in a clinical trial and achieved a complete recovery. Now, thirteen years later, 22 year-old Christina is spending a year as a researcher in a hematology lab at NIH performing data analysis on clinical trials, working for the same doctor, Dr. Neal Young, who saved her life. Her stint as a researcher will at least temporarily come to an end this fall as Christina will start medical school at the University of Chicago, the same place where she received her undergraduate degree. Christina had been considering taking a break between college and medical school, but a call from Matthew’s mother, Sally, and their warm conversation about her son’s experience influenced her to choose to spend a year working in the lab. “I was taken by surprise and extremely grateful for my resulting flood of memories upon hearing the voice of a concerned parent,” says Christina, a Harahan, Louisiana native.
Her experience with aplastic anemia has influenced her to pursue a medical career where she hopes to become a physician involved in clinical trial work specializing in hematology/oncology. Christina is very interested in global health having spent last summer on a research internship in Taipei, Taiwan and time as an undergraduate studying in Cape Town, South Africa. Christina has been a volunteer at multiple children’s hospitals and has also played on her school’s women’s ultimate frisbee team, competing in tournaments across the country. This is Christina’s second Debono scholarship and third AA&MDSIF scholarship.
In Her Own WordsWith my current occupation in the hematology branch of the NIH, I feel really privileged to do research in a field that has affected me directly. I have had the opportunity to follow residents making their rounds and even had the chance to talk to a few aplastic anemia patients about my story. My time at the NIH has only reinforced my career aspirations to become a practicing physician involved in clinical trial work. I was able to attend the AA&MDSIF Scientific Symposium and learned more about the current and future therapies of different bone marrow disorders. This conference was really eye-opening to me in terms of the global nature of these diseases and the difference of care between the U.S. and places in Asia. I am certain I would like to do some clinical work abroad in the future and help bridge the gap in healthcare in third world countries. I have also spent the last few months volunteering at the Children’s Inn at the NIH. Giving back to the community that gave me a home away from home while I was sick and bringing cheer to the current residents there has been truly inspirational. I am very lucky to be able to return to the place where I got better from aplastic anemia and do all that I can to help others too.
Nick’s mother likes to tell people that her son is always churning out new ideas and goals, and that it’s hard to keep up with him. Nick is a runner, youth basketball coach and an outstanding student at Northeastern University with a 3.8 G.P.A. Now entering his senior year of college, he has already been accepted into Tufts University School of Medicine’s Early Assurance Program and will start medical school in August 2015. Nick has a sense of direction beyond his 21 years, something he directly attributes to his aplastic anemia diagnosis at the age of 15 when he was a sophomore in high school. The Barrington, Rhode Island native was treated with immunosuppressive therapy and after a difficult year, his health returned. Nick says that the whole experience made him grow closer to his family and recognize how precious life can be.
The first-time Debono scholar has taken the experience and used it to inspire himself and others, especially children. Since he was a freshman in college, he has coached three teams of 10-13 year-olds in a basketball league which includes a study hall component to emphasize the importance of education. He directs the study hall portion of the program. He also spent a summer working in a camp for disabled children. In high school, Nick was the ace pitcher for one of the top high school baseball teams in New England. Even though he eventually returned to the mound, his dreams of college baseball were no longer possible because of the effects of his illness. Instead, he turned to running as a new outlet. He joined a fitness group and began training, completing his first half marathon in September 2013. Nick recently completed a full marathon, raising over $2,500 for charity.
In His Own WordsI can’t even begin to describe the overwhelming emotion that left me speechless when I found out that I was accepted into the Tufts University School of Medicine Early Assurance Program. I never thought tears of joy were real, until that moment. I couldn’t stop thinking about being sick five short years ago, and how much I had overcome. Following my acceptance to this program I put some thought into how I wanted to use my future medical training and where I could see myself being happy down the line. A few extremely influential people in my life inspired me to pursue a career as a physician in the armed forces. I am extremely motivated by the morals and ethics that the armed forces stand for and the amazing career opportunities that would be available to me. As one may imagine, this is slightly more complicated when you have medical records that resemble a dictionary, and the unabridged version at that.
With the support of my doctors, I am going to work diligently to prove to the medical review board that I am in the best shape of my life. With the additional free time provided to me by the Tufts early acceptance, I decided I would train for and run a marathon, which as you can expect, caused my mom to shake her head in disbelief. However, I had a bigger purpose in mind than just simply running. I decided that, in conjunction with my training, I would raise money for The Tomorrow Fund, the organization that is partially responsible for saving my life. I wanted to find a way to thank everyone who was a part of this amazing organization. I also wanted to show children in the position I was in five years ago, that the road to recovery may seem impossible, but it’s pretty incredible when you get to the other side. And finally, I wanted to prove to myself that nothing in life would hold me back again.
This is Chris’s fourth AA&MDSIF scholarship and the third time he has been a recipient of the Matthew Debono Memorial Scholarship. The aspiring physician will be entering his third year at Eastern Virginia Medical School. Besides his academic prowess, what stands out about Chris is his outstanding character. His dream is to one day open a clinic in a small village in Haiti so “he can provide care to people who currently live without their basic needs being met.” He has been to Haiti three times.
Chris says that surviving a blood disorder has instilled in him a feeling that he can do anything. He was diagnosed with aplastic anemia at the age of two and received a bone marrow transplant from his brother. The memories of his family and his own struggle to survive have left an indelible mark on him. “I honestly believe that every person goes through certain trials that strengthen them and build within them a resolve to make a real difference in the world,” says Chris. The 24-year-old from Chesapeake, Virginia plans to work in pediatric hematology and oncology. He is vice president of his medical school’s chapter of the American Medical Association, a position that allows him to speak with health care leaders throughout the country, particularly those in the hematology-oncology field. Chris recently won a David Brown Memorial Medical Research award. It is given to a student who demonstrates scholastic aptitude and interest in medical research and is named after an astronaut who lost his life in the space shuttle Columbia disaster.
In His Own WordsSince last year's application, I have had a huge year! I got married on July 20, 2013 to my amazing wife, who also works for the medical school that I attend. We are both very active in volunteering with our youth group and in our community. I continue to be active with feeding the homeless and organizing different events to help those in need. I have also been active in spreading the information about aplastic anemia and the AA&MDSIF. Every year, the medical school holds a scholarship dinner with booths to help promote the different scholarships. Due to the alphabet starting with "A," the Aplastic Anemia & MDS International Foundation’s Debono scholarship was the first one people saw as they came in. This was very special to set up a booth honoring Matthew and his family's impact on my life. My career plans have not changed, as I am just a passionate as ever to become a doctor and help children going through various disorders like the one I overcame as a child. My medical school experience has really helped me grow as an individual because I am able to provide families with assistance from a medical professional's standpoint on my clinical rotations through the hospital. It is such a special time for me to give hope to families that they will get through the current tempest in their life.
In 2008, twelve-year-old Tashia was living a very active life in her hometown of Myrtle Creek, Oregon, playing on two softball teams, running track and excelling academically. That all changed when she was diagnosed with aplastic anemia. Her diagnosis began a difficult journey where she had to receive daily blood transfusions, unsuccessful ATG treatments and eventually a bone marrow transplant. She missed three years of school and had to give up the sports she loved. Post-transplant, her problems continued resulting in two hip surgeries and a hip replacement.
Things have improved markedly for Tashia who is now 18. While unable to play sports at the level she once attained, in high school she was able to play varsity softball, basketball and coach volleyball. Academically, she achieved a 3.9 G.P.A and will graduate ranked fifth out of 96 students from her senior class. She has been a member of the National Honor Society all four years of high school, and raised money for local charities such as Relay for Life and the March of Dimes. Throughout high school, she took numerous college courses and was accepted into Oregon State University’s competitive Honors College to pursue a career in physical therapy – a career completely inspired by her own experience with the disease. She hopes to one day open her own physical therapy practice for cancer patients where she can “help patients not only in treatment, but also their life after treatment.” This is Tashia’s first Debono scholarship.
In Her Own WordsWhile I was in the hospital, my family tried to keep my mind off of my illness. They wanted me to play cards, color, read, or go on walks – anything to keep me occupied. My advice to anyone who is diagnosed with a life threatening disease would be to stay busy and stay positive. When I was busy, my illness was the last thing on my mind. Of course there were certain times when I was frustrated, but I knew this happened to me for a reason. If this happens to you, your life may never return to normal, but you have to create the path to your new normal. Being diagnosed with a life-threatening disease makes more of an impact than most people realize. Being finished with treatment of an illness does not necessarily end the trauma. Not only can it destroy your body physically, it can also change your emotional state of mind. Although aplastic anemia took away part of my childhood and so many things that I loved, it has led me down a path that may, in effect, better my future. This disease has completely shaped my career goals and changed my outlook on life.
Kayla has always been hard working. She worked as a crew manager at White Castle Hamburgers while she was in high school and is now working her way through the Christ College for Nursing and Health Sciences in Cincinnati as a patient care assistant in two hospitals. While her work ethic has not changed, her goals and dreams have changed dramatically, brought on by an aplastic anemia diagnosis in 2011. Prior to her diagnosis, she wanted to be a plastic surgeon. Today, Kayla’s dream is to work as a nurse with bone marrow failure patients in the same transplant unit at Cincinnati Children’s Hospital where she received her bone marrow transplant in 2012. The Elsmere, Kentucky native says that she no longer recognizes the person she was before her diagnosis. She says that now “she is much more caring” and “appreciates every moment and memory” she gets to share with the people in her life.
In December, Kayla will receive her Associate’s degree in Nursing. She will then go on to pursue her bachelor’s degree. An excellent student with a 3.8 G.P.A., this is Kayla’s second consecutive Debono scholarship. When she’s not studying, she is working gaining experience that will help her fulfill her nursing ambitions. In addition to working as a patient care assistant, she has also started volunteering with the organization Cancer Free Kids where she speaks to raise awareness for blood disorders and pediatric cancer. At some point, Kayla hopes to go on “medical missions” travelling to other hematology/oncology units around the world and helping less fortunate patients. She says “I want to give patients hope that they can make it through just like I did.”
In Her Own WordsThere were many times during treatment that I just wanted to give up, but one of my nurses would come in my room and give me the tough love that I needed to continue my fight. I want to be that for a future patient. I want to be someone's last hope that they need to keep fighting. College feels so much more rewarding after going through treatment. College is taken for granted by so many. I would have taken it for granted if my life would have played out like I had planned in high school. Now, I am so dedicated and determined to achieve my goals. During treatment, all I wanted to do was go to school. Now that I am in school, I do not want to miss a beat. I know how quickly it can be taken away. I am much more aware of everything I have now and so grateful for everything.
Nick was only one-year old when he was diagnosed with aplastic anemia in 1995 and he doesn’t remember much about what he went through. His parents were told he had a slim chance at survival before one year of treatment with immunosuppressive drugs created a remarkable turnaround. Last year, after receiving his first Debono scholarship, Nick started to read the stories of the other recipients. He felt joyful that his fellow scholars were able to fight and overcome their disease. He also gained insight into his own early experience. When a woman in his home town of Harrison, NY died from aplastic anemia, Nick says “it really hit me and showed me how fortunate I was to beat this disease.”
In the fall, Nick will be starting his sophomore year at the State University of New York – University at Albany where he is majoring in business/accounting, a field that he says seems to be his calling. He is an excellent student achieving a 3.6 G.P.A. his first semester in college, and a 3.8 G.P.A. in high school. The nineteen-year-old is also a leader. In high school, Nick was captain of the varsity basketball and junior varsity baseball teams. Nick has been a mentor to young children helping them with their basketball skills and he has raised money for basketball scholarships. When his mother was diagnosed with breast cancer, he raised almost $3,000 for the Avon walk. He has also raised money for autism and a local food pantry. Nick says he is proud to be a Debono scholar and feels a sense of responsibility to carry on Matthew’s legacy. He wishes Matthew was here today so “he could teach me how to impact people’s lives the way he has impacted mine.”
In His Own WordsThis disease taught me about what is important in life and who will forever have a place in my heart. I will forever remember all of the sacrifices that my family made for me. Even though no one in my family was a match and I had to use an alternative treatment, I take comfort in knowing they would do anything for me. This is why I appreciate my family and friends and the little things in life. An important phrase that has been ingrained into my head is that “the best things in life are free.” Money and power blind people every day when the greatest, most valuable things in life are right in front of you. Never take life for granted because tragedy strikes people every day and you do not want to look back on life and regret it.
Besides improving my relationships with others and outlook on life, overcoming this disease has also improved my academics. I have gotten to where I am today because of my work ethic and will to succeed. I have shown this by studying and always asking questions. Because I am not naturally smarter than everyone else, I constantly have to work for my grades. My grades reflect the way I prepare. Preparation is everything and if you give it your all and do whatever you can to put yourself in the right place to succeed, you will be happy with the results.
For Caitlyn, the low point of her experience with severe aplastic anemia came shortly after she received a bone marrow transplant from her sister in October 2010. Having received chemotherapy and then a transplant, she was still in the hospital when she noticed her hair was falling out. She remembers how “devastating” that was for her and how she cried. It was during this time in the hospital, that she “received more support and love than I could ever imagine. My mother was always there with me.” After she was discharged, her immune system was compromised so she had to spend the rest of her freshman year of high school at home, unable to go out in public.
She began to recover over time, self-studying her coursework and bringing herself back mentally and physically. When she returned to high school near her hometown of Romeo, Michigan, the first-time Debono scholar earned a 4.0 G.P.A that placed her in the top 5% of her graduating class. She was also able to return to the soccer field where she played on the varsity high school and travel soccer teams. Caitlyn organized a bone marrow drive in her town and joined SADD (Students Against Destructive Decisions). She also worked part-time through high school at various fast food restaurants. Caitlyn, replete with long-flowing, reddish-blond hair, is getting ready this fall to attend Kettering University in Flint, Michigan. Gifted in math, she plans to major in engineering because “she would like to improve the world one day through technology advancements and make tasks more efficient for people.”
In Her Own WordsLiving in the hospital had been difficult, however, spending the rest of my freshman year at home was just as challenging. My immune system was very weak, similar to a newborn baby, so I was not allowed to go out. I spent my days alone, teaching myself. I focused on keeping up with my school work and getting back into shape because I had gained weight in the hospital.
I'm proud of what I accomplished. I got my body back in shape and even made Oxford High School’s varsity soccer team the next year. As for school, I did all the work for my classes, took the final exams, and passed with all A's and one B. It was hard to teach classes like biology, Spanish II, and algebra II to myself, but I did it. I consider the 2010-2011 school year to be the most difficult part of my life. Although I do not, and probably never will understand why I became "sick," I do not regret it. I learned so much about the importance of life and how hard work and motivation can accomplish anything. I became a better, stronger person after going through a life-threatening experience. My goal is to enlighten others about aplastic anemia and help those in similar situations. I hope my story will inspire others to join the Bone Marrow Registry and have the chance to save a life.
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 diagnosed as a toddler with MDS and had a bone marrow transplant at age two-and-a-half. Her challenges have only served to make her more determined to become a nurse. “I want to bring them the faith, love, and help that I was so lucky to get and what makes me a survivor,” she says.
In the fall, Annette will be starting at Curry College in Massachusetts where she has been admitted into the nursing school. The Wakefield, Massachusetts native was a strong student in high school and involved in several activities including marching band, drama club, and jazz band where she played flute. She sang in her school chorus the last three years of high school and served on the Boston Children’s Hospital Teen Advisory Committee which advocates for the unique needs of teen patients, specifically the transition from pediatric to adult health care. This summer she is volunteering at Boston Children’s on a surgical floor. She accomplished all that she did in high school despite having two open heart surgeries in her freshman and sophomore years to remove a benign heart tumor. “The tumor was found during my annual post-BMT cardiology check-up,” she says. “I think of the MDS and resulting transplant as a blessing because the tumor may not have been found in time otherwise.” In June, Annette’s BMT donor traveled from England to celebrate her well-earned high school graduation with her. This is her first Debono scholarship.
In Her Own WordsIt's not a scar. It’s my story. It looks like it has wings and is shaped like a butterfly. I think of it as my symbol of rebirth, a second chance after my diagnosis of myelodysplastic syndromes (MDS) when I was 13 months old. Of all my scars, the butterfly scar on my chest is my favorite because it has that special meaning. It symbolizes where I’ve been and where I am going. I want to be a nurse. I got my butterfly scar from the central venous line for my matched, unrelated bone marrow transplant (BMT) that I received at the age of two and one-half. After that, I got other scars on my knees and hips from orthopedic surgeries. Another scar is five inches long, runs down the center of my chest, and is from two open-heart surgeries.
My scars are symbols and are significant to my personal identity. I embrace them because they illustrate who I am, how far I’ve come, and my ability to persevere and feel compassion for other people. One side effect of the chemotherapy and total-body radiation for my bone marrow transplant that I had as a toddler, while my brain was still rapidly developing, is my learning disability that affects my brain’s processing speed and learning new, complex material. Because of it, I need to work harder in school, especially on math and science. Despite this, I’ve always been motivated to do the best I possibly can and to succeed in school and reach my goals. My reward has been the increased confidence and satisfaction that comes from overcoming a challenge. I accomplish anything I set my mind to and that will carry over to college. I won’t give up. I’ll push myself.
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 his family hope to meet her some day, but for now communicate through Facebook. The transplant occurred in June 2011. Thomas had to miss a year of school and had debilitating secondary issues post-transplant including two knee surgeries.
Now it has been three years since his transplant and Thomas is pain free. The Plano, Texas native was an excellent student in high school achieving a 3.94 G.P.A. despite his physical challenges. He also played bassoon for his high school marching band. Thomas says “he just did what had to be done knowing there would be a time in his life without monthly doctor appointments and so many medications.” In the fall, the first-time Debono scholar will attend the University of Texas-Dallas where he will pursue a degree in chemical engineering. Before his disease he says he would not have considered the medical field, but now “it is the only place he can see himself in the future.” He believes that cancer can be as easily treated “as the flu and he wants to be a part of that” contributing to medical research and drug development. Because of his post-transplant issues, the 17-year-old is particularly interested in treatments that will alleviate the side effects of chemotherapy and secondary issues related to toxicity of treatment.
In His Own Words
Alexa loves feeling that she is “an evolving being.” Her
diagnosis last fall of severe aplastic anemia has made her determined to “not
lose herself to this trauma – just end up acquiring extra qualities, thoughts
and quirks along the way.” Alexa is creative and artistic and she had
chosen Columbia College in Chicago, a top school for the creative arts, to
pursue her dreams of a career in television writing and production. The
semester had just started last fall when she noticed bruises all over her body.
Soon she was diagnosed and had to return home to Fargo, North Dakota with her
mother, but not before multiple hospitalizations. Treated with immunotherapy,
the 19-year-old has been getting better, although she still remains under her
doctor’s care. This fall, Alexa will be attending Minnesota State University in
Moorhead, Minnesota close to her home. She is now hoping for a return to
Columbia College in the fall of 2015, as her health permits.
Prior to her diagnosis, Alexa describes herself as “an extroverted, semi-professional dancer with 13 years worth of training - a workaholic dedicated to her extra-curricular activites.” In high school, she maintained an excellent 3.7 G.P.A and was a member of the National Honor Society. She won first place in a high school dance competition, danced in high school musicals and professionally with the Fargo Moorhead Ballet Company. She also sang in musical productions, and was the editor in chief of a school publication. Because she was so active, her months of isolation after treatment were very difficult for her. One of her favorite song lyrics says “It takes getting everything you’ve ever wanted, and losing it all to know what true freedom is.” When the first-time Debono scholar starts creating television programming, her goal is to create situation comedies and a fictional show based around hospital life and patient stories in an effort to educate the public. She wants to create awareness about blood drives and bone marrow transplants and provide insights to the struggles of doctors, nurses, patients and families.
In Her Own WordsOne of my greatest reluctances during this process was towards meeting any other survivors, talking to any other patients, or engaging in any other types of community for fear of losing previous identity and just being known as “the sick girl” for the rest of my life. I did not want anyone or anything from this part of my life to follow me into my future, nor did I want to allow myself to love another person just to lose them in the long run.
This was all flawed thinking. The new people are the perks. All of the nurses, doctors, therapists, and patients have incredible stories and life experiences. Making a friend my age who was on my floor in the hospital was one of the better things I’ve done this entire year. Being diagnosed with a life-threatening illness, treating it, and recovering from it, will always be one of the worst moments of anyone’s life. This is something that will be on your mind and occasionally in your dreams for the rest of your life. Paranoia and suspicion of relapse will haunt and the flirtation of hope during this process will hurt. However, a lack of confidence in the surrounding world, forces one to place a stronger sense of security in yourself. Instead of looking at the unfairness I’ve been dealt, I force myself to take a look in the mirror and be thankful for a new sense of enlightenment, a new type of empathy, and the knowledge that day by day, fewer things will be able to shake my sense of self or my pride in my newly discovered strength.
Kim thought she was invincible. Before she was diagnosed with PNH in 2009, the then 22-year-old from Carbondale, Illinois could count the number of times she’d been ill on one hand. Accepting the diagnosis was not easy, but she wasn’t just concerned with herself. She was six months pregnant and was worried how the illness would affect her son. Fortunately, Alexander was born “perfectly healthy.” Kim began treatment with the drug eculizumab (soliris), but her blood counts while stabilized, remained low. In visiting her physician every two weeks, Kim would have to sit in the chemotherapy room for her drug infusions. She would watch other patients looking weak and frail and it made her uncomfortable until she changed her perspective.
She says she realized that those in the chemotherapy room were really “warriors in the depths of a battle. These people are among the strongest on earth and I was getting the chance to prove that I could stand with them.” Kim realized that her attitude towards her disease was very important and that she needed to become “a warrior” herself. She began to learn about PNH, attend patient and family conferences and live every day with a positive outlook. It was at this point that her medical team realized that she needed a bone marrow transplant because her counts remained too low – even after a year of treatment. Her sister was a close match and Kim received a transplant in 2011 undergoing a week of chemotherapy. Two-and-a-half years have now passed and Kim says her health is good, but the experience observing chemotherapy patients influenced her career choice. In the past year, she has started to work towards her bachelor’s degree in psychology earning a 4.0 G.P.A at Central Arizona College and earning her first Debono scholarship. After relocating with her family to Illinois, Kim will continue her studies at Southern Illinois University and eventually wants to pursue her doctorate.
In Her Own WordsI have always known that I would have a career in public service. I wanted to make a difference in people’s lives - to help motivate and inspire people and be on the front row as they reached for their dreams. Being diagnosed with PNH only cemented this idea of wanting to help others but, changed my approach of doing so. When you are a frequent visitor to the chemo room, you get the chance to see people at probably their lowest and most fragile state. You will soon notice that there are generally two groups of people in the chemo room; those who refuse to let their situation affect their happiness and those who have a harder time accepting their situation. I am a people watcher and was inspired by so many people who smiled the whole time through chemo and even would joke with the nurses and those around them.
However, for every person who was smiling, there were those who were not. I really didn’t understand how much of an advantage the smiling patients had until the time for my bone marrow transplant came. I was required to meet with a psychologist as part of getting ready for the transplant. It was in my meetings with her that it really hit me how important your mental outlook is to the success of treatment. My goal is to become part of a medical team to help patients with chronic and terminal diseases accept their situation, and get into a positive frame of mind, so that they can take more control and have the best possible outcome.
At the age of six, Kinsey gave an impromptu speech on stage to thank donors for the transfusions that were helping keep her alive in her battle with severe aplastic anemia. She said, “I call my illness the dragon. My parents call me a dragon slayer. ALL of you here today are dragon slayers!” Kinsey says her goal now is the same as it was when she was six – to be heard. Kinsey is a gifted motivational speaker and she uses her ability to help others. She has made over 50 speeches about her experience with aplastic anemia and raised over $500,000 for charity speaking for leading health/education organizations such as the American Cancer Society, American Heart Association and the Red Cross. In 2006, nine-year-old Kinsey was the keynote speaker for AA&MDSIF’s national patient and family conference.
This fall, 17-year-old Kinsey will begin college at Stanford University in California where she will major in Human Biology and Political Science. Her dream job is to become the United States Surgeon General. She says she wants to combine her love of medicine and politics “to help create a world where all people would receive any treatment that could help them regardless of their ability to pay.” During the course of Kinsey’s lengthy medical treatment, her family went over $250,000 in debt. Her public speaking schedule has been kept in addition to normal things like attending high school near her home of Goshen, Kentucky. In high school, Kinsey was an “A” student and was recognized as a national merit scholar and a Coca-Cola scholar, which is awarded to the top 150 high school seniors in the country. She was high school captain of her school’s Quick Recall team, an academic competition where her team was a two-time state finalist. She was captain of her high school field hockey team, active in Junior Achievement, Girl Scouts and has won numerous community service awards. In addition to telling her own story, Kinsey feels an obligation to tell the stories of others. Kinsey says, “there is no reason why I lived and they didn’t, not really, but through service and speaking, I will make reason out of it.” This is her first Debono scholarship.
In Her Own WordsMy overall chance of being alive today is .00047%. On March 21, 2002, at the age of 5, I was diagnosed with very severe aplastic anemia. After seven weeks, I flew to Milwaukee where a specialist in aplastic anemia told my parents, “With or without a transplant, she probably has four weeks.” After 27 months of immune suppression chemotherapy, dozens of biopsies, hundreds of transfusions, more days and nights in the hospital than I could count and the birth of a sibling match, I finally went into remission (without a transplant). For three years my health was pretty stable. Then myocarditis, another auto-immune disorder caused by heart to stop seven times in one day. My frightening health history has been my most significant challenge by far: not merely because I had to fight for my life, but because it made me feel so different and alone. I was the only bald kid in my first grade class. I’m the only person in my senior class with a bucket list. Sometimes I think, “With all that I’ve survived, what can possibly kill me?” But other days I wonder, “With everything that’s happened, what are the chances I’ll make it through high school?” So, I have enough on my bucket list to last me 80 more years, but the intensity to try to do it all before I turn 18. I’m inspired by my iPhone screensaver: a collage of four of my friends and heroes - Talia, Zach, Bella and Lane – with the words, “They wouldn’t waste a second.” If they had lived, they wouldn’t waste a second. So I shouldn’t.
In 2012, 16-year-old Rasha was feeling very isolated in the Duke University Hospital transplant unit, when she made a friend. Nine-year old Jamie, awaiting a transplant for sickle cell anemia, was also there and he wanted someone to play with. They made each other laugh, played cards and watched movies together. It made a difficult time bearable. After receiving her brother’s bone marrow due to her aplastic anemia diagnosis, Rasha was able to leave the unit after four months. Jamie unfortunately rejected his transplant and passed away. “I remember Jamie and the other patients that were not as lucky as me,” says Rasha. “But I have decided to turn this guilt into a motivating force.”
Rasha is fascinated with science. Even as a patient in the hospital, the inquisitive girl picked the brains of the doctors who treated her trying to learn as much as she could. A brilliant student, the first-time Debono scholar was part of a select group placed in specialized honors and advanced placement classes throughout her high-school career. She was a member of both the math and science honor societies and the Gaithersburg, Maryland native participated in a special research program in collaboration with Johns Hopkins and Rutgers Universities that resulted in her being a published scientist.
As bright as she is, she is also compassionate. She has raised over $35,000 for various causes in third-world countries by selling bracelets as Maryland Ambassador for Project ARC and annually collects cans of food for poor people at her mosque. This fall, Rasha, who is still taking some post-transplant immunosuppressive medications, will attend Montgomery College in Maryland where she plans to complete the biotech program there and then transfer to a four-year school. She hopes to go on to medical school and become a hematologist or complete a PhD to go into medical research. She often thinks of her friend Jamie who she says would have survived had he had a better match. “I believe that it is only fair that everyone gets an equal chance to survive just as I had” she says.” I feel empowered to do all I can to make the world a better place and to give back to those who have helped me.”
In Her Own WordsDue to this challenging and difficult experience, I now see life anew. I cannot express how grateful and fortunate I am for my life-saving transplant. My experience with the doctors and nurses ignited my ambition for science even more, as I was able to see these heroes in action. Their determination to help patients inspired me further while providing me with valuable exposure to the hospital environment. As a child, I always loved science and wanted to pursue a career in the field. This desire to go into research has carried on with me into adulthood, amplified through my transplant experience.
However, this is no longer something I merely want to do; it is something I must do. I believe it is my duty as a survivor to contribute all I can to make my new life meaningful and worthwhile. What causes aplastic anemia? How can we do a bone marrow transplant without requiring harmful chemotherapy and radiation? Can we regenerate the patient’s own stem cells without requiring a transplant? As a curious person, I am haunted by these questions every day and by seeking a career into research, I hope to one day help answer them and improve the lives of others.
It was June 2012, two months after Timberly’s 16th birthday. The team captain and four-year varsity letterman in basketball was finishing a tournament when she first noticed bruises on her body. Her physician in her hometown of Pocatello, Idaho told her she needed to go to Salt Lake City for a bone marrow biopsy fearing she had leukemia. Instead, she was diagnosed with aplastic anemia. Timberly returned home, but soon developed an infection in her left leg and right arm that not only endangered her limbs, but also her life. She was sent right back to Primary Children’s Hospital in Salt Lake City where she endured eight surgeries in 18 days to save her leg. She was in a lot of pain and spent eight months confined to a hospital bed in isolation 150 miles away from her family. “The experience took me to the core of who I am,” says Timberly. “Most people don’t get to realize who they really are until everything has been stripped from them.”
Timberly responded to immunosuppressive therapy and by March 2013 she started to get her life back and resume her very successful high school career. Before her illness, she was class president of her freshman, sophomore and junior classes and upon her return was elected Student Body President. She earned almost straight A’s and was eventually able to return to the basketball court. During high school, she was also the soccer team captain and ran track. Timberly sang in the choir and founded an African-American club. This fall, she will start college at Utah State University. She is unsure what career she will pursue but is considering a medical career, specifically, pediatric orthopedic surgery because of the surgeon that saved her leg. Timberly is also interested in broadcast journalism. “Educationally, I know exactly what I want to accomplish,” says the first-time Debono scholar. “As an African-American, I recognize that many of my ancestors were denied the right to educational opportunities. I acknowledge their sacrifices and feel it is my responsibility to work hard and make my own sacrifices in my educational pursuits.”
In Her Own WordsMy friends and community members showered me with inspiration, kindness and strength. I was overwhelmed with their generosity in offering their own time and resources to help me and my family. Their service filled my heart with humility and hope. With the help of my health care professionals, family, and friends, my body responded to immunosuppressant therapy, and I have been back in school for a year, since March of 2013. I worked harder than I have ever worked in my life with several physical therapists to rehabilitate my leg. We weren’t sure if I would ever run again, or return to the basketball court. I did. My team had a successful season, and I was able to contribute.
I will probably remember a few big shots that I hit or honors that I received, but I will most remember the kindness and support of not only my teammates, but also my opponents and their coaches and parents. I think we all learned that there are more important things than basketball. This experience has completely impacted who I am today. I turned eighteen years old in April. I don’t take anything for granted, and live each day to the fullest recognizing that every moment is precious. This is my hope.