Esther Deborah Stephen is the Founder and Chief Executive Officer of But I Fly Innovations Inc., an organization committed to raising widespread awareness of rare diseases and transforming that awareness into groundbreaking action against rare disease through advocacy, research, education, and innovation.
Esther’s mission is rooted in her personal medical journey, combined with a lifelong passion for helping people. From childhood, she believed in using solutions that already exist while continually asking what else might be possible. She dreamed of becoming a physician and developing treatments that could improve patients’ lives.
She and her brother once described themselves as “little kids with big ideas,” a phrase that continues to capture the creativity, curiosity, determination, and imagination behind her work.
Esther’s commitment to serving others began early in life. Growing up, she traveled with her family throughout the United States, including 32 states, as well as internationally to India and Canada. During family trips involving social work and volunteering, she would bring her schoolbooks with her, continuing her education while traveling and serving others.
During one of these volunteer trips with her parents, Esther encountered the parents of a young child who was battling a rare and aggressive form of brain cancer. The child was undergoing numerous treatments, yet the family had been given very little hope.
Esther was only 14 years old at the time, but witnessing the child’s suffering and seeing the parents endure the uncertainty of their child’s illness deeply affected her. The experience became a defining moment in her young life.
It strengthened her determination to become a pediatric oncologist so that she could care for children facing cancer and support their families. It also sparked her desire to pursue medical research, with the hope of helping discover and develop better treatments for children suffering from the devastating effects of cancer.
That experience became one of the earliest moments when Esther began connecting her love of science with her passion for helping people. Long before she became a patient herself, she was already thinking about how medicine, research, compassion, and innovation could come together to give children and families greater hope.
Her family regularly provided food, clothing, encouragement, and practical support to people in need and welcomed individuals and families into their home. Esther helped care for children who came into their home by preparing meals, reading stories, singing, babysitting, and encouraging them to recognize their potential.
She also helped care for her older brother, who has severe autism and food intolerances. These experiences gave Esther an early understanding of how medical and developmental challenges can affect an entire family. She witnessed the long journeys families may face in obtaining appropriate testing and treatment, as well as the financial, emotional, and practical burdens that can accompany complex medical needs.
Her commitment to service extended into nursing homes, homeless shelters, drug rehabilitation centers, churches, hospitals, and other community settings. At the Bowery Mission, she and her family sang for people experiencing homelessness and shared speeches of encouragement before helping serve a meal.
These experiences helped shape Esther’s belief that meaningful service requires compassion, dignity, patience, encouragement, and genuine human connection.
Esther was homeschooled by her parents, an experience that encouraged independent learning and intellectual exploration. Her passion for education went beyond completing academic requirements. She wanted to understand how things worked and how knowledge could be used to solve problems and help people.
At sixteen, Esther began taking college courses with honors and eventually became a pre-medical Honors student.
While still in high school, she completed the MedAchieve Program at Touro College of Osteopathic Medicine in March 2020. Through the program, she attended medical lectures, studied anatomy, participated in hands-on learning experiences, observed medical procedures, and had the solemn privilege of handling medically preserved human organs, including the heart, brain, and lungs.
Her academic interests also extended into the humanities. At sixteen, she won a writing competition at SUNY Orange, with her work “Tail the Truth” published in the college literary magazine, The PULP. She also received a certificate for excellence through the SUNY Orange Achievements in Research & Scholarship program for her work in English.
Even after serious medical challenges interrupted her education, Esther demonstrated remarkable determination and completed her final college semester with a 4.0 GPA.
Her original goal was to become a pediatric oncologist, combining her love of science with her desire to help children battling cancer. Her early encounter with a child suffering from rare and aggressive brain cancer played an important role in shaping that goal. She also hoped to pursue research that could contribute to better medical treatments for children facing cancer.
Although her medical journey ultimately took her in a different direction, her commitment to understanding disease and improving patients’ lives remained.
Esther has consistently used her knowledge and experiences to encourage and empower others.
In eleventh grade, she mentored older students participating in a biology summer course. She later encouraged and counseled college students facing difficult circumstances.
She also taught international online classes for children in the United States, India, the Middle East, and Europe, focusing on character development, positive mindsets, personal responsibility, and helping young people recognize their potential and ability to contribute meaningfully to their communities. Before the COVID-19 pandemic, she also taught beginner piano lessons to children.
At SUNY Orange, Esther served as a student senator, secretary of the Biology Club, and in other leadership roles. She also served on the college’s safety and security governance committee, where her medical background contributed to discussions during the COVID-19 pandemic.
Her advocacy included meeting with New York State Senator James Skoufis regarding college financial needs and meeting with Dr. Kristine Young, President of SUNY Orange, concerning issues affecting students.
Esther also met with Dr. Jim Malatras, who served in senior positions in New York State government and later became Chancellor of the State University of New York. She advocated for college funding and for students who had experienced mistreatment or discrimination.
She continues to participate in the rare-disease community as an active member of RARE Young Adults at RARE Foundation, contributing to efforts that elevate the experiences and needs of young adults living with rare diseases.
Esther is an author, poet, singer, songwriter, and creative thinker.
Her writing explores hope, perseverance, courage, identity, purpose, and embracing individuality. Her poems include “Wings of Hope” and “Let’s Be Rare!”
Her creativity has always complemented her scientific interests. She developed models of the human body because of her fascination with anatomy, wrote and developed songs, learned to play three musical instruments, and taught herself multiple languages, including Spanish.
She also independently learned much of Braille so that she could communicate with and assist people who are blind or visually impaired.
At twelve years old, Esther competed through her local YMCA chess club and won a medal after winning multiple chess matches in one sitting. This was an early expression of the strategic thinking, concentration, perseverance, and problem-solving that continue to influence her work.
Esther’s understanding of healthcare was transformed when she became a patient herself.
In 2020, she experienced her first series of hospitalizations following life-threatening rare seizures. During the COVID-19 era, when she was admitted to the emergency room at Garnet Health Medical Center, her parents were not permitted to be with her because of hospital restrictions, and her siblings could not visit her.
In 2021, Esther experienced another serious medical crisis involving rare seizures and other complex medical conditions that forced her to discontinue her studies. Again, when she was admitted to the emergency room, her parents were not permitted to be with her because of COVID-era hospital restrictions, and her siblings could not visit her.
Her subsequent medical journey involved multiple hospitalizations and serious, complex medical challenges. During an extended period of hospitalization, she spent seven days in the intensive care unit, followed by circumstances that resulted in an approximately thirty-day hospitalization while doctors worked to manage her serious medical condition.
During extended hospitalizations, Esther eventually received permission to have her mother and some of her family members with her.
These experiences gave Esther firsthand understanding of the challenges faced by patients and families dealing with serious or poorly understood illnesses. At the same time, her background in medical education gave her a profound appreciation for physicians, nurses, specialists, researchers, and other healthcare professionals who work to care for patients.
Esther’s perspective is therefore shaped by two sides of the healthcare experience. She understands medicine as someone who once aspired to practice it and as someone who has personally experienced the vulnerability and complexity of being a patient.
This perspective is central to her advocacy.
She believes patients, families, healthcare professionals, researchers, and institutions can work together through communication, collaboration, respect, understanding, and trust.
In 2026, Esther founded But I Fly Innovations Inc. to transform her lifelong passion for helping people into a dedicated rare-disease mission.
The organization focuses on four interconnected areas:
For Esther, innovation reflects a principle she has carried since childhood: Use what already exists, but never stop asking what else might be possible.
Esther’s vision extends across every state in the United States and throughout nations around the world.
She believes rare diseases must become more widely understood and that awareness should lead to action.
Her guiding principle is: Widespread Awareness Which Leads to Groundbreaking Action!
For Esther, this means transforming awareness into groundbreaking action against rare disease through stronger advocacy, increased research, better education, bold innovation, collaboration, improved support, and the pursuit of new possibilities for patients and families.
Her global outlook has also been shaped by her love for people from different cultures, nationalities, ethnicities, and backgrounds. Her interest in languages, international education, travel, service, and communication has reinforced her belief that people can work together across geographic, cultural, and linguistic differences toward a common purpose.
Esther Deborah Stephen’s journey brings together science, medicine, education, service, leadership, advocacy, creativity, strategic thinking, and lived experience with serious and rare disease.
The same curiosity that once led a young girl to study anatomy, explore languages, learn Braille, compete in chess, write, create music, and dream of becoming a physician now fuels her work as a rare-disease advocate and organizational leader.
Her path toward medicine was interrupted, but her purpose was not.
The “little kid with big ideas” grew up, and those big ideas became a mission.
Today, Esther leads But I Fly Innovations Inc. with a vision of a world where rare diseases are no longer overlooked or misunderstood; where patients and families are heard; where research and innovation are pursued boldly; where healthcare professionals and communities are empowered with knowledge; and where widespread awareness becomes groundbreaking action against rare disease.
Widespread Awareness Which Leads to Groundbreaking Action!