Sometimes the most challenging battles are the most rewarding. When I was six years old, I was diagnosed with a life-threatening autoimmune disease called Idiopathic Very Severe Aplastic Anemia. Chemotherapy, radiation treatments, transfusions, two bone marrow transplants, and a stem cell boost later, I now realize that my struggle was a blessing. As a result of my treatments, I suffer from childhood PTSD and insomnia. Using my experiences, I can make treatments easier for new patients.
While going through my transplant, I learned the importance of self-care. Keeping my physical and mental strength was key to my healing. I had to exercise, eat special food with my medicine, and drink lots of water. The transplant took a toll not only on my body but on my mind as well. To keep my spirits high, I did crafts, learned breathing exercises, and maintained a daily schedule. I even created a “glitter shop” where I would make glitter bookmarks using glitter glue and scotch-tape and give them to the nurses and specialists, which they wear with pride to this day.
The greatest form of self-care that I struggled with was getting enough sleep. My medicine would make me hyper, but the chemo would tire me out. The biggest obstacle to getting enough sleep would be the annoying beeping coming from the IV poles. Every time I would begin to fall asleep, the IV poles would go off and wake me up. This took a toll not only on my body but on my mind as well. To this day, the sound of beeping can trigger an anxiety attack and make me feel like I’m back in the hospital. This can make grocery shopping and baking very difficult.
To solve this problem, I envisioned a Bluetooth alarm that would notify the nurse’s station that an IV pole was going off in a specific room. Usually, the IV pole would go off in the patient’s room, then they would contact the nurse’s station, but with the Bluetooth alarm, the nurses can still be notified of the IV pole while allowing the patient to rest. Because of this alarm, future patients would not associate the sound of beeping with trauma, eliminating a trigger that can cause an anxiety attack. Through this invention, I am showing kids that there is a light at the end of the tunnel by helping them fight the battle I have already won.
During my time in treatment, I saw people of different backgrounds helping each other for the same cause. Doctors, nurses, and specialists worldwide came together to help me fight my battle. I learned that it’s not someone’s label that defines a person but their willingness to come together to help another human being. Because of my disease and treatments, I matured quickly for my age. This growth caused me to look for a deeper understanding of the circumstances occurring around me, such as questioning, “Why is this happening?” and “How can I help others going through this?” That thought process of searching beyond the face value has stuck and helped develop my character.
After my treatment, I joined the Youth Advisory program for the Stony Brook Children’s Hospital. The Youth Advisory comprised a group of teens once diagnosed with deadly diseases who underwent treatment. We had the unique experience of having input while a new pediatric hospital was being designed. In this program, we created new ways to aid children undergoing treatment and devised ways to make hospital living spaces more comfortable based on our experiences. The Youth Advisory Board did this by putting together care boxes for families filled with hygiene products, toys, blankets, and special creams for children who were in pain because we knew what creams would work for them since we already went through that experience.
One of the great things the Youth Advisory Board did for survivors was starting an annual children’s pediatric prom where kids could celebrate their prom in case they could not attend a prom of their own. The Youth Advisory also formed new programs, such as getting streaming services for families to be used in isolation rooms and at the hospital’s new Ronald McDonald House, where families can stay while their child is undergoing treatment. Working with the Youth Advisory, I am showing kids there is a light at the end of the tunnel by helping them fight the battle I have already won. Because of my battle with Very Severe Aplastic Anemia, I gained an understanding that having an “interesting life” gives me a new perspective on how we all relate to each other in the fabric of life.
Other than my sickness there has been one great constant throughout my life; creating art. I would use art as a coping mechanism in the hospital when I was a child and even to this day. Art is a universal language that inspires curiosity and a new way of thinking. It pushes people to expand their communication beyond the status quo and can generate strong emotions without using words or actions. In the future, I hope to use my strength, gifts and talents to encourage others to be stronger. I want to do this through the beautiful power of art by creating inspiring masterpieces. By receiving this scholarship, I can go to Ringling College of Art and Design to sharpen my creative skill sets to bring a voice to my work. I plan to create inspiring masterpieces by becoming a creative director for a leading entertainment studio. By bringing new ideas and concept designs to the industry, I can create new forms of entertainment and emotionally evoking stories through movies, tv-series and video games. I will face any challenges I meet along the way with determination and find new innovative ways to inspire change in others.