Elijah Stacy, a 2020 graduate of Centennial High School in Corona-Norco Unified School District, has gained considerable media attention for his newly released book, A Small If, in which he discusses his challenges with a deadly disease and offers inspiration for others. From interviews on local and national news to an opportunity to meet Jeff Bezos, Amazon Founder and CEO, Elijah’s efforts to bring attention to Duchenne muscular dystrophy are yielding exciting opportunities to stretch his leadership skills and impact future generations. His goal and mission are clear and fueled with passion for helping others: find a cure for the disease, minimize human suffering, and propel human prosperity.
Duchenne is a disease in young people that deteriorates muscle, gradually taking the ability to walk, their ability to move, and eventually, their ability to breathe. Elijah’s brother Max lost his life to the disease, and their younger brother Kai also has Duchenne. Rather than being overwhelmed by the disease, Elijah has embraced the difficulties and made them his platform for helping others.
At age 16, facing painful surgery to straighten his spine, Elijah challenged his doctor to find another option. When the doctor presented Elijah with the option of intense physical therapy, that if followed closely, could straighten his back, Elijah signed on, even as the doctor emphasized it was “a small if.” Elijah held on to the chance he was given, followed the arduous therapy regiment, avoided surgery and transformed “a small if” into success – and, of course, the title of his book.
It quickly becomes clear as Elijah talks about being a student in Corona-Norco USD, that it is part of his personality to thrive when faced with purposeful tests.
“I never liked school work that you did just to do it – I liked challenge and debate,” Elijah said.
He sought out a demanding education by enrolling in the International Baccalaureate (IB) program, taking Advanced Placement courses, and competing on the Mock Trial team. Despite having Duchenne and becoming dependent on a wheelchair for mobility in fourth grade, Elijah continued attending school as a traditional student until COVID-19 interrupted in his senior year of high school.
Despite the significant obstacles he had to overcome to continue on campus, Elijah believes “education changes things.” Elijah knows from experience that educators who “get to know their students and learn their needs, are doing more than passing on knowledge – they are leading with authenticity.”
Elijah found this to be true as early as fourth grade, when he was transitioning to using a wheelchair and the administration at his elementary school walked with him to class to make sure he had a clear path. Then, at El Cerrito Middle School, Elijah’s Physical Education teacher Dr. Mejico, not only took steps to ensure he had physical access to activities, Elijah recalls how she “engaged competitively with me during games, making it acceptable for others to do the same.” She made sure he was authentically part of the class, “making it more fun and inclusive for everyone.” And, later, in 9th grade Biology class, Elijah and his classmates were discussing articles about CRISPR gene editing technology in groups, but Elijah’s discussion of the technology’s potential for curing his disease was so passionate, his teacher Mr. Skagg embraced the opportunity for all groups to join in with Elijah’s discussion.
When asked what advice he would give teachers working with students with disabilities, Elijah would encourage teachers to learn about the disease impacting students in order to be aware of causes of behavior and to help recognize their own preconceived notions.
“Teachers often seemed to be hard on these students, perhaps to encourage them, but reasons for missing school, like fatigue, may be an honest explanation and not an excuse,” Elijah said.
When Dr. Mejico was named the 2019 California Teacher of the Year, Elijah went back to El Cerrito Middle School to offer a tribute in the video produced in her honor. In the video, Elijah praises Dr. Mejico who “made me a better person by teaching me to just believe in myself and really just try things . . . just go for it. She is a life-changing teacher.”
Elijah took her words to heart, and in 8th grade, developed an interest in business, marketing, and persuasion, and started reading finance and business books on his own. While reading about inspiring business leaders who achieved success over their lifetimes, Elijah faced the reality that “most leaders have time, but Duchenne doesn’t allow time.” Again, not shying away from a challenge and perhaps inspired by Dr. Mejico’s words, Elijah asked the question, “what is the law that says you have to be a certain age to be great?”
Not wasting any time, at age 15 with advice from his Mock Trial lawyer coach on how to set up a non-profit and with $600 raised in a Go Fund Me campaign, Elijah launched Destroy Duchenne. He connected with leaders from the Corona-Norco USD who agreed to serve on the Board of Directors and were instrumental in helping establish the mission, vision, goals for the non-profit.
Elijah shared his disappointment that his years of school culminated in a drive through graduation ceremony, but he appreciates the support his school community has provided. He continues to build on that relationship, speaking to district leadership and inspiring the current students at his alma mater.
“Don’t worry about what it is supposed to be like to be young. Figure out what you want and accept it. Make sure it serves other people and brings you fulfillment,” Elijah said.
When asked how he measures his own success in finding a cure for Duchenne, Elijah looks for his effectiveness as a disruptor, “look at the things that I have done that have not been done before.” And, that list of things is quite impressive: establishing Destroy Duchenne, writing A Small If, gaining support and attention from the local community, extending that reach with coverage on local and national television, and having the opportunity to interview with Jeff Bezos. Although Elijah recognizes his personal accomplishment, his pride comes from knowing others will be helped by his efforts to move a cure for Duchenne’s forward.
Asked why he decided to write a book, Elijah explained, “my story is not an elevator pitch story and the book is not just a biography.” It is his story along with lessons he has learned for overcoming adversity, and supporting his goal to minimize human suffering and propel human prosperity. When Elijah met with Jeff Bezos, his big takeaway from the esteemed business leader was both encouragement to pursue this goal and his recognition of Elijah’s dedication. Elijah recalls that Bezos told him people will always want less suffering and more prosperity and therefore “your cause is never going to change”. Consistent with his character, Elijah has embraced this as a challenge to do more.
Elijah holds his own life up for similar scrutiny, “I ask myself, ‘would you be ok with a little kid growing up to be you?’” And, with momentum on his side, it is easy to believe that soon kids will grow up in a world where Elijah Stacy, with his strong character and the authentic leadership, has achieved his goals to find a cure for Duchenne, while minimizing human suffering, and propelling human prosperity.