COTA for Team Jacob

Our Story

My journey begins in October 2005 just a month before my first birthday. I spiked a high fever and the pediatrician heard a murmur for the first time. I was sent to see Dr. Orie, a pediatric cardiologist in Buffalo, New York, where they discovered I have hypertrophic cardiomyopathy. This came as a shock to my parents. There is a family history in my mother’s family, but she was told when she was 12 years old that she did not have this. It turns out that was not the case and this gene was passed through my mother and to me. I did genetic testing through Harvard and they were able to locate the gene and we were able to test the rest of our family. From the time of diagnosis to 2014 I was seen at UPMC Children’s hospital every few months. In August of 2014 my family and I relocated to North Carolina where my care was transferred to the pediatric heart team at Duke University Medical Center primarily under Dr. Michael Carboni. I had my first heart surgery in November 2014 where a defibrillator and pacemaker were placed and a few cardiac catherizations in the years to follow.

There have been several times when my cardiology teams have considered placing me on the heart transplant list, and after my symptoms have increased and other organs started to be affected, I was placed on the transplant list in May 2022 at Duke University Medical Center. My family and I were hopeful for a while that this would not be needed until much later in my life, but this is the best decision for my future. I am excited to have my transplant and start the healing process and enjoy life without all of the symptoms and limitations I currently have. I am about to start my senior year at Apex Friendship High School and plan to attend college after to pursue a career possibly in forensics or the criminal justice system.

I want to thank all of those who have constantly kept me in their prayers and supported Team Jacob at the American Heart Association Heart Walks both in Buffalo, NY, and Raleigh, NC. A special thanks to my parents and sister who support me daily but also to my extended family who all reside out of state and all of my friends here in North Carolina. It can be stressful for all of us while I wait for a heart to be available, with the uncertainty of my health and now a knowing of the upcoming financial burden. The typical heart transplant costs can be well over $1 million and though insurance may cover a large part, we anticipate over $75,000 in future bills during my journey. Please consider making a donation to COTA in my honor – anything helps! Finally, and most importantly, I want to thank so many of you who have kept me and my family in your thoughts and prayers as they are what supports us in this journey.

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.