ROCKY MOUNTAIN NEWS
Title: An Angel Brushes Denver
Article by Javier Erik Olvera
Photos by Judy Walgren
Clutching the railing, Mauricio Saravia limps down the steps of the small Lincoln Street apartment he shares with his mother and out the door into an autumn downpour.
Rain drips onto the lumps that disfigure his skull, down his black shoulder-length hair, glistening on his jutting cheekbones and over the jacket that drapes the hump on his back.
Some passersby gawk while others quickly avert their eyes as he approaches a crowded Colfax Avenue bus stop.
A boy with a skateboard steps forward and stares at Saravia. "Oh my God," he mutters, "the Elephant Man."
If he had a minute to spare on this dreary afternoon, it would be Saravia's nature to share it with the boy, to tell him in a gentle way about the importance of looking beyond a stranger's face, that inner beauty abounds.
But he has a doctor's appointment uptown and a sense of urgency about getting there. He has long been accustomed to the startled reaction of others, as well as their misperception that he is afflicted by Elephant Man disease.
He says he doesn't notice strangers staring at him. "They just don't know me," he says, glancing away, seemingly self-conscious. "I see the same thing you see in the mirror - myself looking back." Saravia, 34, an artist, poet and, more recently, a small magazine publisher, is well-known, even beloved, in some Denver circles, where friends organize fund-raisers to help save him from the rare mutant gene called McCune-Albright syndrome. One symptom suffered by Saravia is bone dysplasia, which can be life-threatening as abnormal bone growth not only deforms his body but presses against vital organs.
He says he doesn't notice strangers staring at him. "They just don't know me," he says, glancing away, seemingly self-conscious. "I see the same thing you see in the mirror - myself looking back."
Saravia, 34, an artist, poet and, more recently, a small magazine publisher, is well-known, even beloved, in some Denver circles, where friends organize fund-raisers to help save him from the rare mutant gene called McCune-Albright syndrome.
One symptom suffered by Saravia is bone dysplasia, which can be life-threatening as abnormal bone growth not only deforms his body but presses against vital organs.
In Saravia's case, McCune-Albright has disrupted his life in anguishing spurts. He now fears that the mutant gene has awakened from a decade-long dormancy.
It's back, he's sure - the aches in his skull are all too familiar.
He first felt this degree of pain as a toddler, when he banged his head against the floor in despair.
When doctors pronounced the handsome little boy as entirely normal - "el niño perfecto."
When they later changed their minds and said, gravely, brain cancer.
When they then said, no, not brain cancer, something worse.
Climbing onto the bus, Saravia eyes a spot away from the other passengers. Their heads swivel as he moves down the aisle. He settles uncomfortably into a seat and studies his hands - long, smooth and supple - seemingly untouched by the disease.
The woman who has walked with Saravia down Lincoln to Colfax and climbs onto the bus is his mother, Maria "Marisa" Damele.
A former English language teacher in their native Uruguay, Damele came to Denver three years ago, sensing that her son needed her, the same sense that made her push back at the doctors all those years ago.
She's not using a coarse metaphor, but giving voice to a real, physical flutter that she believes is God's way of sending messages to the pure of faith.
"God gave me the gift to save my son," she says.
As Saravia enters the Caritas Clinic at St. Joseph Hospital, patients in the waiting room stop what they're doing and watch him approach the reception desk. This is his third visit. He's being seen by Dr. Bruce Smith, a hospital resident.
As she waits, Damele frets. She and her son believe that they need to be at the University of California-Los Angeles Medical Center, where endocrinologists have developed some expertise with the random disorder that strikes about one in 1 million people.
But that will take money!
Damele pinches the bridge of her nose. There's no medical insurance, nowhere to turn for the MRIs and other tests that she believes might determine what's going on inside her son's body.
"I'm depressed - I don't know what else to do," she says with a sigh. "I always knew he'd live before, but today I don't know - I just don't know." For his part, Smith has ordered blood tests and prescribed a muscle relaxant, a sleeping pill and an antihistamine.
Speaking with permission of the family, Smith says Saravia's McCune-Albright progression is unique to his experience.
"I had never seen anything like it," he says, "and had only heard about it in medical school."
During one visit, Saravia complained of leg pain that kept him awake at night and hurt so badly he couldn't walk even short distances. Both legs ached, including the left one, which already contains a platinum rod to strengthen a femur weakened by dysplasia.
Dr. Aaron Calderon, medical director at the clinic, says Saravia's condition sent him to the medical texts, as well. But he didn't see any obvious signs of bone growth that would call for CAT scans or MRIs.
"It seemed more like a muscular problem than a bone problem," he says, also speaking with the family's permission. He suggested physical therapy.
Out of the doctors' earshot, Damele disagrees.
"Something is wrong," she says. "I know it."
McCune-Albright syndrome is named for the two physicians who first described it more than a half-century ago. It is not Elephant Man disease (or neurofibromatosis), a disfiguring genetic disorder that causes tumors to form on nerves throughout the body, or elephantiaisis, a disorder of the lymphatic system that causes extreme enlargement of affected areas. But the illnesses share the ability to cause the enlargement of limbs or parts of the skull and torso.
McCune-Albright "is the nightmare disease because it's so rare," says Dr. Michael T. Collins of the National Institutes of Health, one of the nation's foremost experts on the disorder. It is not hereditary. Instead, it is caused by a gene mutation that Collins says flips on "the switch" of hormone-producing glands and never shuts them off.
Saravia, the first of four children, was born in January 1970 in Montevideo, Uruguay, the nation's capital and most populous city. The South Atlantic seaport is known for its beautiful beaches, parks and monuments.
Saravia's father, Gumersindo, was a Uruguayan government administrator from a politically connected family.
As Saravia grew from infancy, he seemed to need less and less sleep, his mother says. He was a hyperactive learner and talker, and, by the time he was 2, in distinct and unusual pain. Damele felt the stirrings of her instincts.
One pediatrician told her, "Perhaps it's you - you're an anxious mother."
Finally, when Saravia was 5, another doctor agreed to X-ray the child's skull. Gumersindo and Maria cried when they heard the diagnosis: brain cancer. They carried the X-ray to one of Uruguay's most renowned neurologists for a second opinion. Damele has never forgotten the words that slipped from the brain specialist's lips: "Oh my God. This isn't cancer - it's worse."
Saravia became the second known case of McCune-Albright syndrome in Uruguay, a country which then had a population of 2.8 million people.
The doctors said he likely wouldn't live past 15, but agreed almost immediately to open his skull to attempt to relieve the pressure that had the child in agony. His left eye was blinded in that surgery. When he awoke from the operation, the first words he spoke still cause tears to stream down his mother's face.
"No puedo ver, no puedo ver," she says, recalling his fright. I can't see. I can't see.
His parents were not about to give in to the grim prognosis, and through family connections arranged to have their "Mauri" seen at the Shriners Hospital in Springfield, Mass. Part of hospital's mission is to provide the highest quality care to children and adolescents who have bone problems.
The trip by the boy and his father from Montevideo to Springfield became an annual excursion. There were multiple surgeries.
Then one year, when he was 9 and being examined by a panel of specialists, he heard the words that would inform his life to this day.
"He'll be dead by 30," one doctor said.
He swept through a library of 3,000 books, sharing what he read with his father. Gumersindo spent countless hours at his son's side, often talking to him about life late into the night.
The boy seized on Gandhi's thought that negative words fuel depression. He avoided speaking negative words. He studied the writings of Indian spiritual leader Jiddu Krishnamurti during long recoveries from a second skull surgery and another that put the platinum rod in his left femur. His younger sisters - Catalina, Eloisa and Macarena - doted on him and viewed him no differently from any other big brother.
He began to draw and paint, at first concentrating on perfect images as his own face began to take on an odd shape at age 15.
He sought out the company of older people, asking them what they had learned about the true meaning of life.
For hours, he'd stay inside his house, crafting words into poems about being "gentle with life" and not treating it with "illusions of materialism."
Gradually, as his face contorted, his image of perfection in his paintings skewed, as well. He started working on abstracts akin to Pablo Picasso's cubist portraits. He painted until the angles became so blurred by brush strokes that the only recognizable features were eyes and mouths. His artwork began gaining recognition from gallery owners in Uruguay, and then a segment on national TV turned him into a celebrity.
Some who saw the report - "A Day in the Life of Mauricio Saravia" - interpreted his unusual appearance and artistic gifts to mean something more.
"People thought he was an angel," Damele says. "We couldn't walk down the street for several months without people stopping to talk to him or to touch him."
To this day, she says, church congregations reach out to him. "They believe he has the power to heal."
As Saravia matured into his 20s, his illness went into apparent remission. He grew physically stronger, as did his desire to see the world that he had experienced largely in books. But travel would have to wait. His beloved father, Gumersindo, his friend, confidant and unyielding advocate, weakened by a blood clot on his brain a few years before, was dying.
Over the long course of their relationship, through the long years of his disorder, Saravia's father had been a constant, a source of strength and solace by his bedside.
In 1998, when Gumersindo died, the son returned the favor. Saravia was at his father's bedside.
Techno music thumps against the brick walls of the dimly lit Denver nightclub, Vinyl. Bartenders toss bottles in the air and catch them behind their backs as a prelude to mixing drinks.
Special-effects lighting shoots across the ceiling. Break dancers take turns spinning on their backs in the center of the dance floor and doing routines that look remarkably similar to a gymnast on a pommel horse.
The man of the night, Saravia, greets the steady flow of friends making their way into the club. They are here to raise money to help him get to Los Angeles and the UCLA Medical Center.
"His higher good is my only goal," says disc jockey and best friend Brian Wood, who organized the event. "I chose to help him because my heart tells me to, and I feel that he is more human than anyone I have ever met."
Wood voices the thought expressed by many of Saravia's Denver friends: Knowing him is to be a better person. "I told him many times that the reason he has been chosen for this life is that he is an angel," Wood said, summoning the same image used by those in the Montevideo streets, "and only an angel could have the strength and faith to endure the hand that he has been dealt."
Two friends - pretty blondes - sit beside him, reading through a folder of poems Saravia has written from his life experiences. He would divide them into two volumes, Whispers of Light and Whispers of the Dark.
He's a beautiful man, Wood says, as Vinyl rocks for Saravia.
"It is my hope that the world can only look past his physical appearance . . . to see the brilliant-minded and never-ending plethora of self-expression that he displays.
"His form is unusual and distorted but his path in life is clear - he is here to teach and to love."
Saravia didn't fare as well with a dope-addicted neighbor who lived in the apartment where he had sublet a room. The man beat Saravia so severely that he was hospitalized.
A family friend in Denver gave him all the encouragement he needed to come west.
His artistic skills landed him a job as a designer and Web developer at a company where he was paid about $3,500 a month. He was on his own at last and supporting himself in the United States.
"He wasn't only surviving, but he was living his life," says Damele. "Everything seemed fine, and he didn't need to go to any doctors."
Soon after, however, the tech bust hit and Saravia's company went belly up. He began e-mailing his mother about the stress of earning a living, while struggling with simple tasks.
Three years ago, Damele packed up her home in Montevideo, gave up her job teaching English to Army soldiers and moved to Denver.
It seemed to help. Saravia started a Web site called Artists Interviews, full of question-and-answer sessions he'd conducted by phone with well-known celebrities, including model Cindy Margolis and the band Deep Dish. At night, he'd go to popular downtown nightclubs, getting lost in the sounds of techno music that he would later re-create on his computer.
He did freelance graphic artist gigs to help pay the bills and made more friends. Melinda Yeary, a local real estate agent, met Saravia five years ago and describes him as having a rare gift to move around economic and social barriers to befriend anyone and change lives.
"He is an inspiring person in many ways," says Yeary, who has been active in raising funds to help Saravia get medical treatment at UCLA.
Sleepless most nights, Saravia began work on his most ambitious local project, designing the inaugural print edition of Artist Interviews.
During this past summer, he felt the recurrence of old pains. Once his mother found him rolling in anguish, holding his sides. He said it was like the past, when a growth in his rib cage pressed against his intestines.
But he moved ahead with his work. His cell phone screen displays the words carpe diem - seize the day.
Damele offers a mother's diagnosis. She believes the stress of trying to produce the magazine, of dealing with money woes, awakened his mutant gene.
The magazine made it through one edition before Saravia's financing collapsed. For now, though, the most pressing issue is to find out what is happening with his health. Collins, the National Institutes of Health expert who treats a study group of 150 people with McCune-Albright, says that is definitely the right course. The syndrome can be dormant for years, he said, but problems can appear suddenly, without provocation.
Temporary blindness or blurred vision could be a sign that bone matter is pressing against optical nerves, he said. Leg pain could be a hairline fracture that could worsen.
"If something is different - you've got to figure out what it is," said Collins.
The Bethesda, Md.-based doctor hasn't treated Saravia, but has reviewed photographs. He didn't mute his response: "A striking case - my heart goes out to him." Saravia is more given to offering sympathy than to receiving it. He and his mother moved out of their Lincoln Street apartment.
Other than their clothes, computers and his poems and paintings, their personal possessions have been given away.
"They're just material objects that can be replaced," he says. "I don't want to leave Denver, but I know that I have to.
"I think of all of this as a challenge. And I'm used to challenges..."