COTA for Jesse's Journey

Our Story

Meet Jesse Fulkerson, a living testament to the power of resilience. Continuously defying odds and leaving memorable impressions with everyone he meets. Jesse is an incredible young man, full of love, joy, and an innocent way of being. Jesse is the guy you always want in your corner, the kind of person who would do anything for anyone, always putting others before himself with a truly selfless heart. Don’t let these characteristics fool you though, he inherited a fiery spirit and determined attitude from his father and is not someone to be underestimated! Jesse has a love for life and a yearning to enjoy any adventure that presents itself.

Above all else, Jesse most treasures time with his family, especially his brothers, and he exudes the utmost pride in being an uncle to his 3 nieces and soon-to-be nephew. He spends every moment he can outdoors. Due to his mental restrictions, Jesse is unable to drive on public roads, however, that does not stop him from having the need for speed! Jesse has a fleet of vehicles, his favorites of which being his four-wheeler and mule, in which you will find him regularly driving, speeding around the farm with an infectious smile.

Jesse is also a man of selfless and intentional tendencies. After his father’s passing, Jesse absorbed the role as his mother, Lisa’s, protector and defender without hesitation. She isn’t just his parent, but a lifelong ally and friend of Jesse’s. He loves accompanying her to work every day and tackling their occupational challenges together as a team. Together, they navigate life’s uncertainties with grace and determination, their bond growing stronger with each passing day. Lisa has been Jesse’s strongest support and leading navigator as he has made his way through this journey of life. Lisa has aided him in his young life as his communicator, providing and teaching him ways to expressively communicate when he was physically unable; she stood by him as he learned life’s young lessons and consequences as he grew intellectually and socially in the school setting; she provided him with the supports and resources he needed to tackle the world of employment; and has been his unwavering support system through all medical and emotional needs.

To know Jesse is to love Jesse, and after hearing Jesse’s story one can only help but to admire him and the barriers he has overcome in his lifetime. So, let’s take a ride into Jesse’s journey…

Jesse’s journey began on May 22, 1989. His birth was one of no complications; an assumed healthy baby boy was brought into this world by his mother, Lisa, and his father, Eric. However, just hours after birth, Jesse’s health took a turn as complications arose and his skin shifted to a worrisome color of gray. Jesse was given immediate medical attention with a prompt assessment by a cardiologist. Upon completion of the assessment, Jesse’s parents were informed that Jesse had one of two possible life-threatening heart issues and he needed urgent attention. The next day Jesse was flown to Norton Children’s Hospital in Louisville, KY, where he was swiftly examined and discovered to have hypoplastic left heart syndrome. With this diagnosis, the family then learned that the left side of Jesse’s heart was underdeveloped and could not pump oxygen-rich blood to the rest of his body, leaving the right side of his heart working overload to try and compensate. This congenital heart defect was not one of light concern. Due to the limited functionality of his heart, it was ascertained that Jesse needed a heart transplant as soon as possible to save his life. At a mere five days old, Jesse became the eleventh heart transplant recipient at Norton Children’s Hospital.

The transplant was successful, but Jesse’s journey was far from over. While in recovery, Jesse suffered a seizure that deprived his brain of oxygen for a critical period of time. Due to this, Jesse received a diagnosis of mild mental delays following his recovery. In addition, after his surgery, they found the respirator had caused scarring and temporary paralysis of his vocal folds, leading to years of non-verbal language in his early childhood. Jesse communicated using only gestures and American sign language (ASL) until the age of 4 when he spontaneously acquired mobility of one vocal fold giving him the ability to make sounds gasping inwardly. This led to years of speech therapy and an eventual attainment of a voice for the first time in his life. Although an answered prayer, due to the limited functionality and continued partial paralysis of his vocal folds, Jesse’s voice remains perpetually “hoarse” as a result.  

With great hope for a healthy baby after completion of the surgery, Jesse’s family was left in dismay upon receiving a poor prognosis. Jesse was given only a 20% chance of surviving until the age of two. Doctors also predicted much of his short life to be spent in and out of hospitals due to his immunocompromised state. Against all odds, Jesse prevailed above all expectations. Hospital stays were infrequent and he began thriving, not only surpassing his second birthday, but 35 of them.

Jesse has remained strong, faithful, and always optimistic throughout his journey. However, in 2020, Jesse suffered the hardest and most painful hurdle of his journey yet: his father and his best friend, Eric, passed away from cancer. Jesse has continued to struggle with this loss at a mental capacity, while his body unknowingly was struggling itself within. Severe shoulder pains led doctors to discover blockages in his heart, necessitating a pacemaker and defibrillator being placed in 2021 and 8 separate stents eventually being placed to aid the heart in proper functionality across the last 3.5 years.

As the blockages have increased in severity and his need for more stents have escalated in frequency, today, at 35 years old, Jesse’s body is facing a new hurdle: chronic rejection of his heart and coronary artery disease. Due to a lack of effectiveness with treatment, Jesse is now facing the need for a second heart transplant.

Throughout his life, Jesse has been nothing short of a miracle. He is a true blessing to his family, friends, and co-workers. It is now our turn to do something for the man who has never asked for a favor a day in his life. We have partnered with the Children’s Organ Transplant Association (COTA) to assist with transplant-related expenses as Jesse’s family embarks upon this next journey. COTA will aid us in fundraising and to best utilize all resources we can to help COTA for Jesse’s Journey in the most successful way we can.

Now, as Jesse faces the need for a second heart transplant, Jesse’s family and friends rally around him, determined to see him thrive for another 35+ years.

Please help us keep his journey going, because Jesse’s story is not just about survival; it’s about the power of love, community, and the human spirit. Let’s go on this ride together, rallying around Jesse, his mother, and his family in the best way we know possible: united.

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.