Rocky Dennis: Navigating Life with Craniodiaphyseal Dysplasia
Roy Lee "Rocky" Dennis, born on 4th December 1961 in Glendora, California, lived a life defined not just by the rare condition he was born with, but by the resilience and relationships that sustained him. Though diagnosed with a medical disorder that would alter his appearance and limit his physical abilities, Rocky’s story is far more than that of a boy with a rare disease.
Early Life and Diagnosis
Rocky was born a healthy baby, the younger of two sons, his older half-brother being Joshua Mason from his mother’s previous relationship. For the first two years of his life, there were no outward signs of any abnormalities. However, a routine X-ray, performed when Rocky was just over two years old, revealed an anomaly in his skull, which led to further tests at the UCLA Medical Center. These tests confirmed that Rocky had craniodiaphyseal dysplasia, a rare and severe disorder that causes excessive calcium deposits to accumulate in the skull, thickening the bones and distorting the face.
The condition, sometimes referred to as lionitis, would eventually push his eyes outward and stretch his nose into an elongated shape as his skull grew to twice its normal size. His doctors delivered a grim prognosis. They predicted Rocky would progressively lose his sight and hearing, suffer mental disability, and eventually die as the weight of his skull compressed his brain. Based on the few known cases of the condition, they did not expect him to live beyond the age of seven.
Yet, Rocky’s mother, Florence “Rusty” Tullis, refused to accept the doctors' predictions. A strong-willed and street-savvy woman, Rusty was determined to give Rocky the most ordinary life possible. She did not shy away from her son’s condition, nor did she allow others to define him by it. Rocky was raised with a sense of independence and purpose, attending public school, making friends, and pursuing interests just like any other child his age.
Rusty Dennis: A Mother’s Unyielding Support
Rusty was a central figure in Rocky's life, both as a parent and an advocate. She was deeply involved in the biker community, a lifestyle that might have seemed unconventional to outsiders, but her devotion to Rocky was unwavering. Rusty did not let the dire medical forecasts dictate how Rocky would live. She made sure he attended public school, rejecting doctors’ suggestions to keep him in special education or at home, and she fought fiercely when educators tried to transfer him to special needs classes.
Rusty once remarked, “They tried to say his intelligence was impaired, but it wasn’t true. I think they wanted to keep him out of the classroom because [they thought] it would bother the other kids’ parents.” Her refusal to let the school system place limits on Rocky’s education allowed him to thrive academically. He became a top student, regularly ranking among the best in his class.
Rusty also believed in natural remedies and the power of the mind. She gave Rocky vitamins and encouraged him to rest when he suffered from severe headaches, advising him to "make yourself feel better." Although these treatments could not stop the progression of his condition, Rusty’s philosophy helped Rocky develop a strong sense of self-sufficiency and control over his own wellbeing.
A Typical Day in Rocky’s Life
Despite the challenges posed by his condition, Rocky's daily life was surprisingly similar to that of other boys his age. His mornings were filled with schoolwork, where he excelled academically. Reading and writing were difficult due to his poor eyesight—his vision legally classified him as blind—but Rocky found ways to work around this, memorising large amounts of material. He frequently astonished his teachers with his sharp intellect and remarkable memory.
Rocky was not just a dedicated student, but a socially active and humorous young man. He enjoyed playing pranks on people, especially during Halloween when he would trick his neighbours into thinking he was wearing a mask over his real face. “Rocky always got lots of candy,” Rusty fondly recalled, explaining how his pranks made everyone laugh and helped lighten the mood around his condition.
He also had a deep love for baseball, particularly for collecting baseball cards, which connected him with other boys who shared his interest in the sport. Though his condition prevented him from playing, Rocky was well-versed in baseball trivia and enjoyed discussing the game with friends. His friendships extended beyond shared interests—his kindness, humour, and resilience made him a popular figure at school and in the neighbourhood.
One of his close friends, Eric, was particularly inspired by Rocky’s refusal to let his condition define him. They spent time together after school, often chatting about music, sports, and everyday teenage interests. While Rocky could not physically join his friends in sports or bike riding, he participated through his sharp wit and comedic commentary, ensuring that his presence was always felt.
Humour as a Coping Mechanism
Humour played a significant role in Rocky’s life, not just as a way to connect with others, but as a tool for coping with the challenges posed by craniodiaphyseal dysplasia. When people, including doctors, underestimated him or questioned his abilities, Rocky used humour to disarm them and reclaim control over the situation. His Halloween pranks, where he pretended to be wearing a mask, are just one example of how he used comedy to break down barriers.
One of the more striking moments in his life came when a doctor told him he would eventually go blind. Rocky’s response, delivered with his trademark wit, was, “I don’t believe in being blind.” This defiant statement reflected his larger approach to life: though the medical realities were ever-present, Rocky chose to live beyond those limitations. His humour, combined with his resilience, became a powerful force that helped him, and those around him, deal with the practical and emotional difficulties of his condition.
The Struggles of Declining Health
While Rocky was able to maintain a largely normal life for many years, the physical effects of craniodiaphyseal dysplasia were always a challenge. His condition caused immense pressure on his brain, leading to frequent and intense headaches. By the time he was seven, Rocky had made 42 visits to eye doctors alone, as medical professionals monitored the progression of his vision loss. Despite the constant medical attention, Rocky remained active in his education and social life.
As he entered his teenage years, Rocky’s health began to deteriorate more rapidly. The intense headaches became more frequent, and his once vibrant energy levels dropped. His physique weakened, and the signs of his declining health became more apparent, even to those around him. Yet, Rocky remained as positive and engaged as ever, keeping up with his friends and continuing to excel in school, graduating junior high with honours.
The Final Years
Rocky’s health reached a critical point in 1978, when it became clear that his body could no longer keep up with the pressures imposed by his condition. Despite his remarkable strength and resilience, he began to lose energy and suffer from increasing pain. Rusty, ever attuned to her son’s state of mind, sensed that the end was near.
On 4th October 1978, at the age of 16, Rocky Dennis passed away. Though his death was tragic, it was not entirely unexpected. Rusty had been at her lawyer’s office at the time, preparing to defend herself against a drug possession charge, when she received the devastating call from her then-partner and later husband, Bernie Tullis, who informed her of Rocky’s passing.
Rocky’s body was donated to UCLA for medical research, a decision that reflected Rusty’s hope that his life might contribute to a greater understanding of the rare disorder he had battled. After his death, Rocky was cremated, rather than buried with the baseball cards as depicted in the 1985 film Mask.
Life After Rocky: The Family’s Continuing Struggles
Rocky’s passing left a deep void in the lives of those who knew him, particularly his family. Rusty, who had dedicated herself to her son’s wellbeing for so many years, faced significant struggles in the years after his death. Her life was marked by personal challenges, including battles with drugs and encounters with the legal system, though she remained a fiercely independent and resilient woman.
Further tragedy struck when Rocky’s half-brother, Joshua Mason, passed away from AIDS, adding to the family’s enduring grief. Yet, despite these hardships, Rusty’s memories of Rocky remained a source of strength for her, as she reflected on the deep bond they had shared and the extraordinary life they had lived together.
Rocky Dennis’ life was, in many ways, extraordinary not because of the rare disorder he lived with, but because of the strength, humour, and resilience he displayed throughout. His mother, Rusty, was instrumental in shaping the course of his life, ensuring that he experienced the joys and struggles of childhood and adolescence like any other boy.