OUR UNIQUE BACKGROUNDS AND PERSONAL STRUGGLES HAVE DRIVEN THE FOUR OF US TO MAKE A DIFFERENCE IN THE LIVES OF CHILDREN ACROSS THE COUNTRY.
From the time you could remember I always question why me. My earliest memories of life were the sounds of an alaris pump and doctors mumbling around me. Before I was even 16 months old, my 6 oz ounce body under 2 pacemakers, 4 chest tubes before ultimately my body needed a heart transplant. July 5th 1999 I received my heart. I knew growing up I was lucky enough to see another day but on a daily I found myself ultimately questioning why me. Since my transplant I was on a medication rotation of 16 different medication and a. monthly cardiac Cath procedures. As I grew up not only did, I underwent IR surgical procedure to ensure my body wasn’t rejecting my heart; I also found my habits, thoughts and emotional well-being revolving around my condition. It took me over two decades to realize and truly appreciate the gift I was given. Since that I have been filled with a sense of purpose and know have made it my mission to live everyday with intention and living for my donor. Through NLTOK I want to touch the lives of pediatric patients who have ever felt less of a person because of their diagnosis.
From beating cancer to a diagnosis of Postural Orthostatic Tachycardia Syndrome( POTS)- a majority of my life revolved around my health conditions. I was continuously told the limitations my condition would have on my life from the time I was diagnosed. I found my health accommodations isolating from my peers and teammates. The strongest people I met in my time in the hospital were the kids fighting alongside me. The patients I met through my own medical experience inspired me to pursue a career in medicine. I developed a passion for working with patients with physical and intellectual disabilities, where I have over seven years of experience. Despite my daily battle with my POTS, I am fortunate enough to run track at Western Carolina University, where I will graduate in May with a Bachelor's in Science. Post-graduation, I plan to attend Medical School, where I will be able to further my mission of impacting pediatric patients' lives. My goal is to inspire kids to pursue their dreams through this nonprofit, no matter their magnitude. We are not our diagnosis. You are here for a purpose. No matter your age, gender, or diagnosis, I promise to always advocate and fight for you.
NLTOK meaning has always resonated deep within me since I was a kid myself. Growing up I had always felt that I was “not like the other kids” because I was different. I was picked on, judged and called names because I didn’t fit into the standard mode of a “tough guy” like all the other boys in my surroundings. I was always full of energy, outgoing, creative and befriended everyone no matter what they looked like or where they were from. People thought I was weird, but I didn’t let that stop me from being ME. It was hard at first but as time went on and I became older I learned to embrace my “weirdness” and become more comfortable with myself. It also taught me to always step outside my comfort zone and meet new people and make new friends with other people who were looked at as different. Through this, it not only taught me acceptance of myself is just as important as acceptance of those around me no matter their walk of life but it also taught me to love them, stand by them, and fight for them. This is something I have always believed in as I also have a twin brother who’s partially blind and was born with Cerebral palsy, so from birth something that other kids would look at him and be afraid of and judge him for I saw as normal and beautiful. This is what I think set my foundation strong at such a young age and what made my love and accept those for who they are. I made a promise to myself and my brother that no matter what as long as I am alive I will, even though he can’t walk I will walk for the both of us, even though he can’t see I will see for the both of us, and most importantly I WILL ALWAYS live and fight for the both of us! As my pledge to my brother I promise to do the same for NLTOK and those who are involved! We are in this together to make this world a better place where EVERYONE feels safe and free to be who they are no matter if you were born different or choose to be different, I stand with you!
My life was turned upside down the day I was diagnosed with Lupus and Sjorgen syndrome. I was pregnant with my third child at the time and was informed the lupus was attacking my baby's heart. We were told that the chances of my son surviving were slim. This was the beginning of a long journey for my son and our family. As a mother, it was a challenge to have three young children whom all needed me differently. My youngest eventually required a heart transplant at 16 months after undergoing two pacemakers and four chest tubes. After he was born, I was inspired to give back to others, so I went back to school to become a Respiratory Therapist. I watched my son face emotional, behavioral, and physical barriers that stemmed from his diagnosis. I am excited to be apart of this NLTOK team! I am here to help any parents, children, or person connected to a child struggling with a medical challenge. Together, we can link arms and create a strong community.