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American boy with craniodiaphyseal dysplasia (–)

"Roy Dennis" redirects here. For the British conservationist, see Roy Dennis (conservationist). For the American football player, see Roy Dennis (American football).

Roy Lee "Rocky" Dennis (December 4, &#; October 4, ) was an American teenager who had craniodiaphyseal dysplasia, an extremely rare sclerotic bone disorder.

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The condition usually results in neurological disorders and death during childhood or teenage years. His life was the basis for the drama film Mask.

Early life and diagnosis

Rocky Dennis was born in Glendora, California, to Florence "Rusty" Tullis and Roy Dennis in When he was very young, Dennis frequently had ear and sinus infections.

He underwent a tonsillectomy at age two, at which time doctors detected abnormalities in his x-rays. Over the next year, he visited doctors at University of California, Los Angeles (UCLA)'s medical center multiple times a week, culminating in a diagnosis of craniodiaphyseal dysplasia (CDD), an extremely rare bone disorder that causes bone tissue to build up excessively, including in the skull, causing gradual compression of the brain and thus intracranial hypertension.^[1][3][4][5]

Based on the small number of recorded cases &#; in a television interview, Rusty said Dennis' doctors told her there were seven recorded cases of CDD^[4] &#; doctors predicted that the pressure from bone accumulation on the central nervous system and cranial nerves would destroy his eyesight and hearing, and eventually affect his brain, anticipating he would die prior to his seventh birthday.^[2][5]

Subsequent years

In the years following Dennis' diagnosis, he lived with his parents and older half-brother Joshua in Covina and Glendora.^[5] Many of Rusty's biker friends frequented their home, acting as a secondary support system for the family, particularly following Dennis' parents divorce in ^[1][2][4]

Rusty self-describes her medical philosophy as "I decided early in my life if you could make yourself sick, you could make yourself well," and she taught Dennis that same philosophy.

Florence rusty tullis She was Tullis died of an infection Nov. Tullis was driving a three-wheeled motorcycle through an intersection in Azusa on Oct. The motorcycle struck a curb, throwing her from the bike and into a telephone pole, Azusa police Lt. John Momot said.

When he would complain of a headache, Rusty would tell him to go to his room and "don't come out until you have made yourself well."^[1] Dennis also used breathing exercises and biofeedback to cope with the pain caused by his CDD.^[4][6]

Dennis' vision worsened as he got older, and he was declared legally blind at age six.^[5] When he was seven, an ophthalmologist told Dennis his poor vision meant he would never learn to read.

Rusty handed Dennis a book, which he promptly read aloud before telling the doctor, "I don't believe in being blind."^[1]

Dennis had the opportunity to undergo plastic surgery that could correct his facial deformities, but decided against it. He asked Rusty "Who will I see in the mirror if I change my face?"^[5]

Schooling

Certain details about Dennis' early schooling are unclear, due to inconsistent statements given by Rusty.

In , she appeared on People are Talking, a local San Francisco interview program, and told the hosts she lied about Dennis' age to enroll him in school at age four-and-a-half. When the school found out about Dennis' real age, they told Rusty that Dennis couldn't stay enrolled, but offered a "special school he [could] go to" instead, which she accepted.

She went on to say that Dennis spent "a couple of years" at that school "learning the things that they teach handicapped people" before she began trying to enroll him in public school, by which time he was seven years old.^[4] However, that same year, People Magazine reported that Dennis began school when he was six years old,^[5] and in , the Chicago Tribune reported that Rusty "raised hell" at the idea of Dennis being placed in a "separate school for the handicapped."^[1]

When Rusty attempted to enroll Dennis in school, she was met with significant pushback due to concerns he might be mentally retarded, but she alleges the school staff were actually bothered by Dennis' appearance and concerned with what the other kids' parents might think.

She was successful at campaigning on Dennis' behalf and was able to enroll him in public school, where he was initially academically behind his classmates, but quickly caught up and graduated from Sandburg Junior High as an honor student.^[1][5]

Death

By September , Dennis' health had deteriorated such that he used a wheelchair for the final weeks of his life.

On October 3, the family ate out at a restaurant and it was clear to everyone in attendance how weak Dennis had become.

Florence rusty tullis photo Florence "Rusty" Tullis, the strong-willed biker mother of a son with a rare, disfiguring disease who inspired the movie "Mask," has died. She was Tullis died of an infection Nov. Tullis was driving a three-wheeled motorcycle through an intersection in Azusa on Oct. The motorcycle struck a curb, throwing her from the bike and into a telephone pole, Azusa police said.

That evening, Dennis had a headache, and Rusty, just as she always had, instructed him to go to his room and "make himself well." Dennis died the next morning, October 4. Rusty told People Magazine that she heard him stirring around 6 AM, but he was dead when she went to check on him at 10 AM.^[1][5] His body was donated to UCLA's genetics research center and cremated afterwards.^[6] His official cause of death was sudden arrhythmic death syndrome, a condition of unknown origins that may or may not have been related to CDD.^{[citation needed]}

In popular culture

Peter Bogdanovich directed the film Mask, from Anna Hamilton Phelan's screenplay based on Dennis' life.

Eric Stoltz portrayed Dennis. In one scene in the film, Stoltz's Dennis reads a poem to his mother, Rusty (played by Cher), that was written by Dennis. The movie is based loosely on Dennis' life, with most of the scenes and dialogue altered for dramatic purposes.^[5][7] Rusty told a Chicago Tribune reporter that the film was mostly accurate but with two major departures from reality &#; the events occurred over a period of 10–12 years, rather than one year as depicted in the film; and Dennis' older half-brother, Joshua, is never mentioned in the film.^[1]

Phelan adapted her screenplay into a stage musical of the same name, with music by Barry Mann and Cynthia Weil.

The musical premiered at the Pasadena Playhouse in California on March 12, ^[8]

Swedish pop musician Jens Lekman self-published a song titled "Rocky Dennis' Farewell Song to the Blind Girl", causing DJs to mistakenly call the musician by Rocky Dennis' name.^[9] In , Lekman released Rocky Dennis in Heaven, an EP containing "Rocky Dennis' Farewell Song to the Blind Girl" and two other songs about Dennis.^[10]

References