I am sharing an incredible and inspiring story of resilience, determination, and triumph over adversity, the story of Reuben Dodd, aged 16, who just happens to be my son. It is a story that embodies humanity’s ability to rise above challenges, defy the odds, and achieve the extraordinary. Reuben is a remarkable child who is not only a professional actor, but an honors student, an accomplished comic musical theater actor, and an adaptive, now independent skier.
Born with CHARGE Syndrome, Reuben has multiple heart defects, a coloboma of the eye, choanal atresia, growth retardation, and ear abnormalities leaving Reuben severely-profoundly deaf, cervical spine fusions and scoliosis. I always say that Reuben got the deluxe package. And I still remember my husband’s hastily written notes whilst in that stage of shock, transcribing what later came to mean Tetrology of Fallot, a combination of four heart defects, as then unknown to us.
For many families with a rare disease diagnosis, the moment of discovery doesn’t come until the birth itself, the weight of diagnosis after diagnosis falling upon eyes transfixed in a state of fight or flight. And I will never forget, even if my heart has since healed, the rush of messages of apology, not congratulations, at his birth, as if he was something less than whole.
Facing challenges that many will not experience in a lifetime, Reuben embraced his diagnosis with courage and humor, learning to sign from 9 months of age as his first means of communication, overcoming a staggering 22 surgeries including two open heart surgeries and multiple tracheotomies simply to survive. Supported by his loving family, he continuously turns his disabilities into a driving force to achieve. For Reuben, surviving was never enough: he is thriving.
Reuben landed his breakthrough role in the Lionsgate movie, I Still Believe staring KJ Apa, Gary Sinise, and Shania Twain. His endearing performance not only captivated audiences worldwide, but also challenged stereotypes about disability in the entertainment industry. Following Reuben’s debut, he stared in the short movie, The Bridge, receiving the Los Angeles International Short Film Festival’s Best Young Actor award. He continually seeks authentic representation in casting roles of people with disabilities, and proudly walked the runway for Target in the Runway of Dreams. Beyond this, he seeks out roles where disability is not the focus of the story, where the character just happens to have a disability, but is not defined by it. Heroically, he competes for roles alongside his typically developing peers for characters without disabilities, as if he were a typical teen. It was from a young age that Reuben exhibited a passion for the performing arts. Despite his physical limitations, he pursued his dreams of becoming an actor with charm and dedication. His journey has been characterized by countless auditions and rejections, and yet he has never seemed to doubt himself.
The onus has been on him to prove so much more, and as such he has studied piano for a decade despite his deafness, is studying AP music theory in his spare time, and during Covid, took the opportunity of that first summer to study a year ahead in math. These talents are a testament to the power and the strength of his human spirit in overcoming challenges. He proves that talent knows no physical boundaries.
Fuelled by the same determination that propelled his acting career, he also pursued his passion for sports, embracing the thrill and safety of adaptive skiing for the last 12 years with adaptive recreation charity USARC at Big Bear. His diagnosis was never going to dissuade him from adaptive soccer, waterskiing and snorkeling. Following two open heart surgeries, his heart was given a second chance and he recently ran his first ever 5K at the Rose Bowl, to be followed by the upcoming Dodger Stadium 5K.
His story highlights the critical role inclusivity plays in society, that potential is limitless, unbounded by physical differences and adversity. It reassures us of the transformative power and drive behind his own journey towards self actualization. I believe that sharing Reuben’s story will not only inspire, but also foster a greater understanding and appreciation for diversity in our society, and help readers gain an understanding of what it feels like to have a rare genetic disease. We can all benefit from the grace that Reuben and his fellow people with CHARGE Syndrome with immense disabilities overcome just to exist in their bodies, much less succeed. Reuben’s personality opens the doors for cinematic representation of people with disabilities, and he continues both acting and advocating for the many disability communities in which he belongs.
What would you like to tell other people about CHARGE syndrome?
The CHARGE community are the experts in the field of CHARGE Syndrome. -Catherine, Reuben’s Mom
