In an article by the Fibrous Dysplasia Foundation, the brief and wondrous life of Mauricio Saravia is remembered and celebrated on the advent of his mother’s memoir publication.
Mauricio, who succumbed to complications from fibrous dysplasia in 2008 when he was 39, is one of the most famous representatives of the disease. He found success in the arts, painting and writing, and rubbing elbows with Hollywood’s most beautiful.
Marisa Damele was aware of her son’s sickness very early on in his life. As he grew older, he constantly struggled to gain control of his movements. Damele watched as her child constantly ran into walls, or bumped his head and arms on corners.
As the years rolled on, Marisa and Mauricio met no relief in their struggle. They met with doctors who did not understand the disease, leaving her family responsible for the brunt of the work. They became experts on fibrous dysplasia symptoms and how to treat them. If you’d like to know more about these symptoms or treatments, please click here.
Marisa and Mauricio were originally from Uruguay, but the country did not offer the resources for care that was available in the United States.
“Mauricio and I went on a journey, an odyssey really, to find the best care we could and make the most of this life,”
“His determination and positivity were relentless. He truly believed he had a purpose in life and everyone who met him loved him and became a believer as well.”
At six years old, Mauricio traveled to the United States for his first round of surgery. He was admitted to Shriners Children’s Hospital in Springfield MA. His disease had already ravaged his left eye. After surgery, Mauricio had to stay in the recovery ward of an American hospital for months while his mother and father tended to their lives back home. They had other children, and were well aware of the incoming costs for future surgeries and treatments for Mauricio.
On his own in a strange place, Mauricio set out to learn the language. He practiced English and took up drawing as his wounds healed.
He knew that no one expected him to live long, and that due to his deformities, whatever life he did have would be pitiable and full of misery.
“I think many people who do not fit society’s idea of beauty tend to hide away and shrink into themselves, but Mauricio found a way to reflect and reach outward.”
Mauricio set out to defy society. He killed with kindness, and overwhelmed disgust and negativity with a powerful enthusiasm for life. Marisa tells stories of him heading straight to the middle of the dance floor.. He would dance for himself and soon others would be dancing with them. His positivity was a force stronger than institutionalized standards of beauty.
He immigrated illegally to the US in 1998, claiming Denver as his first continental home. Here he could focus on his artistic endeavors with a greater chance of attaining the medical care he needed. One of his most significant projects was the magazine Artists Interviews. The concept was to interview both celebrities and artists. The success of the magazine helped to propel him into a certain media spotlight, shedding exposure on fibrous dysplasia. Before long, despite his professional accomplishments, Mauricio became seriously ill due to complications from his disease. His mother came to his aid, but after initial care from the Denver hospital, was warned not to return. Their lack of citizenship would not be forgiven the next time.
Mauricio was able to find aid in a Mormon clinic temporarily, but the chronic nature of his illness led him to move to LA. The University of California, Los Angeles allowed him entry to one of their clinics in which his endocrine system was more thoroughly monitored and studied.
His career continued to flourish in LA, where he attended red carpet events for Artist Interviews.
Surrounded by Hollywood’s obsessive tendencies towards beauty, Mauricio offered a plethora of reflexive writings, ruminating on how such an arbitrary thing can have such a overpowering hold on society.
With his endocrine system more under control, his untreated scoliosis was now the thing tormenting him. Towards the last months of his life, eating and speaking had become difficult. No medical institution would perform the surgeries he needed without the safety net of insurance or a large lump sum of money up front.
Mauricio Saravia died in December of 2008, even though fibrous dysplasia is not necessarily a fatal disease when treated properly.
He leaves behind an art academy of his namesake, the Mauricio Saravia Art Academy in Denver, Colorado and the Mauricio Saravia Achievement Award at the Metropolitan Denver University.
While Mauricio’s life leaves a statement of socioeconomics in medicine, immigration in medicine, and FD/MAS in culture and society, the real story is that of a man who overcame adversity with real zest. His mom’s book comes out soon.
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