We are pleased to announce the 2019 Roman Jax Nguyen Scholarship recipient, Kayli Fagan.

Avery’s Angels® Gastroschisis Foundation is pleased to award Kayli Fagan with the 2019 Roman Jax Nguyen Scholarship in the amount of $500 for her college studies at Providence College in art and business.

We carefully review applications annually for someone who is an exemplary candidate, someone who not only is academically excellent, but also actively and authentically engaged in their community in a positive way. And, we are excited to announce, that Kayli is the third Gastroschisis survivor to be awarded this scholarship.

Avery’s Angels® Gastroschisis Foundation is dedicated to providing unconditional support, promoting awareness and research on a global scale. Our commitment to each family, patient and effort no matter where they are is something we hold as a mantra. When reflecting the memory of one of our fallen patients, it is even more important that this standard is exemplified in anything we attach our name to.

It is clear to the committee that our luck is hardly needed. The recipient’s letters of recommendations, resumes and letters of intent show all the dedication and commitment of a highly successful individual. It is with all of our best wishes that we award this scholarship to Kayli Fagan. 

Kayli Fagan – Personal Statement and Essay

Eighteen weeks into my mom’s first pregnancy, my parents went for an AFP blood test. Results showed that there was a complication with the pregnancy. A number of different possibilities were given as to what the exact issue was, all ranging in severity. My parents left the appointment with no certainty and afraid of the future wellbeing of their unborn child, yet, despite the unfortunate news, my parents were ready to take on whatever the future was going to bring them. 

It was not until later in the pregnancy that my parents were given a definite diagnosis – their child was to be born with Gastroschisis. Originally due in February, my mom was advised to schedule a C-Section an entire month early in order to ensure a safe delivery. They were also told that their child would be recovering in the hospital for up to four months. 

For obvious reasons, I don’t remember anything about my recovery, but my family keeps it alive with vivid stories. My parents recall how tiny I was and claim that all five pounds of me could fit right in the palm of their hands. Uncles and aunts tell me about their visits and how they were amazed at the gauze tube that projected from my stomach, holding all of my organs. My grandparents were excited for my arrival and believed that I would make a speedy recovery. My family was scared, of course, but more than anything they were happy. For my family and I, being born with this birth defect wasn’t going to change anything about who I was or who I was going to be. If anything, my birth defect was going to be something to share with others because it was unique and it was rare and it was a way to shed light on a serious issue in such a way that was positive, yet educational. 

I like to think that, even at my earliest stages of life, I didn’t let my birth defect define who I am. Doctors told my parents that I would be recovering in the hospital while my organs were slowly being twisted back into my body for up to four months – I was ready to be discharged from the hospital within a month. Growing up, I never thought I was different from anyone else. I didn’t have a belly button, but I never saw that to be something that I should be ashamed of. As a matter of fact, I often flaunted my lack of belly button. I would tell all my friends and watch the excitement and curiosity wash over them while I told them my story. Going to the beach, I never tried to hide the giant scar that stretched across my abdomen. I would get stares, of course, but I would smile and continue on because, to me, I was normal – lacking a belly button was all I have ever known. 

I know that I am lucky. My parents were told the best case scenario, and after my initial hospitalization I returned to a happy and healthy life. The only times when I felt affected by my defect were when I was hospitalized at the age of five because of severe stomach pains that my parents thought were complications of my Gastroschisis and when I was told I could not participate in sports like hockey and gymnastics because of the risk they posed to my health in regard to my abdominal organs. Unfortunately, other children born with Gastroschisis have faced far more severe consequences and my heart goes out to every child affected as well as their families. 

Gastroschisis only affects a little over a thousand babies each year, making it one of the more rare birth defects. As a matter of fact, I have never met another person who was born with it (although I would love to at some point in my life)! Because it is rare, that means that there is little research and awareness. However, I want to change this. For the rest of my life, I will continue to share my story and be open about Gastroschisis. I want to connect with other survivors and learn about their stories and the ways that they have spread awareness about the defect. Most importantly, I want to help others understand, and even other survivors, that having this birth defect never stopped me from doing anything in my life. If anything, being born with Gastroschisis has given me strength and the power to educate the world on a small population of unique people. 

Learn more about the scholarship program HERE.