Like many things of great consequence, it all started with "Ice Ice Baby." Adalia Rose Williams, at the age of five years, made a video of herself dancing to the Vanilla Ice hit, and the dancing videos were ultimately responsible for what followed: the hundreds of letters, the thousands of emails, the 5.8 million Facebook fans. The unauthorized redneck-rap tribute song selling on iTunes. The obscene put-downs. The death threats.
But first, here is Adalia Rose Williams, now six years and two months old, the most quietly famous six-year-old in the world, maybe. She has bright, brown eyes, thin lips she likes to circle with bright lipstick, and nicknames including Lil Baller, Whiz, and Weasel. She lives with her 24-year-old mother, Natalia Amozurrutia, her 26-year-old step-dad, Ryan Pallante, and her baby brother, Marcelo, at her Grandmother "Gama" Rosa's house in Round Rock, Texas, a city of 100,000 people located 20 miles north of Austin.
Her Best Friend Forever is Edith Henry, a childless married stylist who heard about Adalia from a friend, caught wind that the little girl wanted an iPad, and held an online fundraiser to buy one for her fifth birthday. They've been close ever since. They have slumber parties, play Bus Driver, and do each other's nails and makeup. Whenever Edie visits, Adalia is pregnant, a doll stuffed under her shirt. Her babies are legion, too many to count: Barney, Baby Bop, Piglet.
People who know Adalia always call her brave. Edie's hefty Labrador-shepherd mix, three times Adalia's weight, does not scare her. Needles and IVs, which regularly pierce her skin during her frequent doctor's visits, don't make her cry. One time Adalia dislocated her hip when her grandmother was babysitting, and in the ambulance, she was the one telling Gama not to be scared.
One thing that does scare Adalia, though, is what has happened to John Travolta. She's been obsessed with the Grease movie, watching it over and over, swooning over young Danny Zuko so intently that her mom finally said, "He's not that great—look," and pulled up a current photo of the then-58-year-old. Adalia started to cry.
Adalia knows she's different. She can see she's bald. She's aware how small she is—at 14 pounds, she weighs less than Marcelo, and he's one year old, a baby still, really. Unlike Mommy or Daddy or Gama, she doesn't have eyebrows or eyelashes. Other children sometimes mistake her for a boy, even though she's usually outfitted in pink. She needs help walking up a staircase. She can't go outside alone to play. She doesn't go to school. At the mall, people look at her funny. Her parents explain it's "because they've never seen an angel."
Adalia knows that her difference has a diagnosis, progeria, a condition affecting approximately one child in four million. What she doesn't know is how progeria ends: The average lifespan is 13 years. At six, there's a distinct possibility she's almost halfway through her short life. Natalia and Ryan refuse to talk about that. They focus on the present, not the future.
Adalia also doesn't know that her life has become an international phenomenon, a study in the best and worst of contemporary human nature, as refracted online. Her situation presents odd, ongoing lessons in ethical egoism, ethical altruism, enlightened self-interest, fame lust, sadism, compassion, and charity, one chasing another in an overheated, accelerated timeline.
Progeria is an extremely rare early-aging disorder. First identified in 1897 by the British surgeon Hastings Gilford, who named the condition after the Greek word "progeros" for "prematurely old," Hutchinson-Gilford Progeria Syndrome is so uncommon that, as of November 2012, only 90 known people in the entire world were diagnosed. In the United States, rare diseases are disorders that afflict less than 200,000. Only 18 Americans have Progeria.
Since progeria has historically affected such an infinitesimal percentage of the population, there'd been very little research into the condition until 1999, when Massachusetts parents Scott Berns and Leslie Gordon, both medical doctors, founded the Progeria Research Foundation, after their 21-month-old son Sam was diagnosed. Their combined efforts directly led to the April 2003 announcement that the gene responsible for progeria had been identified, after a century in the dark: It's a gene called LMNA, which normally produces the protein Lamina-A, the structural framework of a cell's nuclear membrane. A mutation to LMNA causes an unstable nucleus, which in this case leads to accelerated aging, before a child's body has even been able to grow.
Kids with progeria tend to demonstrate above-average intelligence. Their aging-like symptoms don't include degenerative brain conditions such as Alzheimers or dementia. Rather, they develop aggressive cases of osteoporosis and artery hardening, along with other cardiovascular problems. The oldest anyone with progeria lived was 27, and the cause of death among progeria patients is almost always heart disease or a stroke.
Newborns who have progeria appear healthy, but they soon stop gaining weight. That was what alarmed 18-year-old Natalia Amozurrutia—Natalie, to her friends—about her two-month-old, who'd arrived crying like a kitten, with a mess of black hair. There was some unusual thickness to her daughter's torso skin, but her mother, Rosa, told her it'd go away, like mothers do.
When the infant still hadn't gained weight at three or four months, Natalia sensed something was wrong. She brought Adalia to a geneticist, who ran blood tests and mentioned progeria as one of a few possibilities.
Natalia, who didn't have a car or a cell phone, rushed to the library. Symptoms of progeria, she learned, included diminished body fat and muscle, hair loss, joint stiffness, and loose skin. "Everything that I read was true about my baby, and that is a feeling that will make you feel like you could throw-up your heart. I was so hurt, so scared, and I didn't know why this was happening," she recalled in a Tumblr post from last summer, dated August 16. "I was terrified, and I didn't know what to do."
After the diagnosis, Natalia's initial instinct was seclusion. "I felt much more comfortable being in my room, playing and listening to music with my baby girl," she wrote. "I kept Adalia away from people for as long as I could because when I would go out, people would just stare. I even had people from high school talking about how ugly my baby was."
Public places became minefields of arbitrary social interactions—sometimes uncomfortable, and occasionally appalling. That's still the case. This past Halloween, the family went trick-or-treating in a group along with Edie, with Adalia dressed as Cleopatra and Marcelo, shirtless in a diaper, as King Tut. At one house, a drunk father saw Adalia and yelled, "Oh my gosh, that's freaky." Edie waited until Adalia was out of earshot and told the man he was disgusting. Another time, outside at the local creek, two five-year-olds ran up to Adalia and asked, "What's wrong with it?" while their parents just watched.
But when Adalia asked if she could talk with their friends and family on Facebook, just like Mommy, Natalia imagined social networking as a controlled environment, a virtual space in which "simply to goof around with Adalia," easier to monitor than the mall or the grocery store. Natalia didn't even have a computer; she was mostly updating Facebook through her phone and Adalia's birthday iPad, uploading video through a 3G signal and maxing out their data plans.
Of course, the Internet is the Internet, the iPad an open window. On May 3 of last year, Natalia created a Facebook page for Adalia with some photos, using the fan-page format because it seemed easier to manage. Within a month, every day and night, complete strangers from around the globe were leaving her public messages on Facebook. Less than a year later, a snippet of Adalia dancing to "Gangnam Style" drew comments from 66 people in a shade under 30 minutes: a Vania Gonçalves from Sao Paolo, Brazil ("I love you, beijos"); Cynthia Mallory, a homemaker from Richmond, Georgia ("awww"); and Zeljko Buinac, a moustached German with YouTube channel of fishing-trip footage ("so sweet").
And then there was another stranger, a teenager named Nick Orlando Geraci with a healthy coat of baby fat, who looked at Natalia's little daughter and decided to share his own message with her and with the world: "I think I just threw up."
Bling Johnson's battle cry is "Let's Get Famous." That's the slogan on his trucker hats and T-shirts. It's the name of his Austin custom car-and-motorcycle shop, a business in the Pflugerville section of town, and it's the theme-song chorus of The Bling Johnson Show, his weekly late-night local TV show, a half-hour tribute to the Texas music scene. It's what he coached Adalia Rose to cheer with him, in a video posted last summer to her YouTube channel: "Let's get fay-muss!"
Bling Johnson is the Southern-rock nightlife alter-ego of a social-media "technologist" at a Fortune 500 company (who asked us not to identify his employer), a divorced father of three. Three and a half years ago, after splitting with his wife of 14 years, Johnson took a videocamera to downtown Austin one Saturday night, randomly interviewed drunk people and posted the results on YouTube. He did the same thing the next weekend at a Texas Longhorns game, and kept doing it, often wearing a cartoony white suit, until he'd built a following on Facebook and YouTube.
"I always said if the views ever go down, I'll stop doing this. They never did," he wrote in a BlingJohnson.com blog post dated last October. "It was on a small scale, but I was becoming a mini-celebrity. And I loved it. Not because I liked the attention. That was nice, but the real reason was because I felt like for the first time in a long time, people valued me."
Johnson had met Edie on a video shoot, and through Edie's Facebook postings, he first learned about Adalia. This was late last May, when Adalia's fan page only had about 600 fans—friends, extended family, and acquaintances—and primarily hosted short scenes from Adalia's daily life, mostly captured in the living room of the modest apartment where Natalia and Ryan were living.
The clips were increasingly shot like mini-broadcasts to an invisible audience, who Adalia addressed warmly with, "Hey, guys!" Then she'd proceed to be exuberant and hilarious, expertly imitating adult mannerisms. Showing off a new carnation-pink wig, she uncannily mimicked the off-camera woman who'd given her the wig, peppering her speech with "like" and an "Oh, my Gawd." In another clip, she draped herself in costume jewelry—bangle bracelets as hoop earrings, a pearl necklace, a big ring worn on two fingers at once—and boasted "I'm reeech" six times in 90 seconds. She'd burst out into song: "Jesus Loves Me," "Leaving on a Jet Plane," Justin Bieber's "Baby."
But Adalia's dancing videos stood apart. She had an impressive rhythm for a child and a gloriously uninhibited abandon. While performing Atlanta rapper V.I.C.'s jerky-armed "Get Silly" dance, Adalia wore a pink Hello Kitty hat sidewards and then, for dramatic effect, threw it off. During an unforgettable hip-wiggling hula-dance to the "Lilo & Stitch Theme Song," the twiggy girl wore a coconut bra and a grass skirt. And "Ice Ice Baby" was a mini-recital of fluidly rhythmic motion, introduced with sassy finger snaps—that's the one people seem to remember best.
Johnson saw Adalia's online videos and adored them. "You can see her personality on the videos—it's overflowing," he told me recently. He thought could help facilitate a little girl's dreams by offering her the chance to be on his show. "How cool would it be to be six years old and get on TV?"
Late last spring, Bling met Adalia, her mom, and her grandmother for the first time at a Starbucks. "It was immediately obvious they didn't know anything about social media," Johnson said. So he set them up with a Twitter account and a YouTube channel, since that's what he did professionally.
Then he went over Adalia's house one afternoon to film for his show and was shocked to discover that the family of four shared a one-bedroom apartment. Natalia, who'd just shaved her head to make a human-hair wig for Adalia, is a stay-at-home mom, Ryan had been out of work, their car had been totaled, and they didn't have a computer. Bling knew immediately what he had to do: he had to help get them a computer, a car, and, ultimately, a house.
He posted about their technological needs on Facebook; within minutes, a Floridian friend offered a computer. Bling decided to give them his own white Cadillac. "Something hit me," he said. "I'm like, 'I need to do this because they don't have a way to get Adalia to her doctor's appointments.'" He'd recently paid off the vehicle. "I pay a lot in child support. I have a job, but I'm paycheck-to-paycheck, so it's not like I'm some rich guy who just gave them a car."
They also, in his opinion, needed somewhere bigger to live. Bling decided to surprise the family by filming them receiving the car and stitching the footage together to make a fundraiser video asking for help buying Adalia a home. "Knowing that there's a timeline on her time here just made me want to do as much as I could, as fast I can," he said. "I'm not trying to get any credit for it—I just felt like it was something they needed and I felt like it was the right thing to do."
When he asked the world to get involved, though, Bling didn't anticipate what kind of involvement might follow.
No one remembers the exact date the Internet discovered Adalia. At some point in late May or early June, Edie recalls Adalia's page shooting up from 600 likes to 10,000 overnight. Within 10 days, the response would be completely out of control.
At first, the online attention was overwhelmingly positive. Teenage girls and maternal-seeming women would write in to tell Adalia she was courageous. They'd write to tell her she was beautiful. They'd write to tell her she was an angel. They wanted to meet her. They loved her joy. Younger girls wanted her for a sister. Moms wanted her to know she was loved.
Danica Surette, a 30-something mommy-blogger residing in Nova Scotia, learned about Adalia from her 12-year-old daughter, Ashlynd, who saw the younger child on Facebook. ("She uses it to contact friends and send silly pictures" is how she described her own kid's social-media habits. "We know her password.") Ashlynd also has special needs—Tourette syndrome, ADD, and OCD—and Surette regards Adalia as an inspiration not only to her 11-year-old, but to ungrateful adults. "Her life expectancy is short, her body is considered geriatric, yet she continues to smile," Surette wrote in an email, in Comic Sans. "Many of us will grow old and gray, and will complain the whole time."
Natalia had naively listed their home address on Adalia's page, and letters of love and support suddenly arrived at an astounding rate, from pen pals named Mackenzie, Katie, Marina. "Adalia loves that she has tons of friends and fans!!!" her mom posted. "She feels like a superstar!!!"
Natalia was also drowning in a flood of Facebook messages. She asked friends to help manage the account, like Edie, and they worked collectively as Team Adalia. In a couple of days, 600 unread messages had poured into her inbox.
The first indication the page was under siege came the night of June 4, 2012, when Natalia posted a public notice asking followers to report anything "inappropriate." The nastiness seemed like a fluke, but then, all of a sudden, it definitely wasn't.
"There were some hideous comments: 'Kill it before it lays eggs,' 'This is the reason abortion should be legal' and on and on and on," Edie told me, still audibly affected. "Some comments that had me up all night long, until 3 o'clock in the morning, crying at the computer, deleting these comments, banning these people. My husband goes, 'You can't do this.' I'm like, 'Natalie can't see these comments! Are you kidding me? This is hideous.'"
By June 10, Adalia's page had a staggering 70,000 likes. That day Natalia sent up another flare that the page was under attack. "I just read some really rude comments on some of Adalia's stuff and it doesn't matter because ADALIA DOESN'T KNOW HOW TO READ!!!!!" she alerted the thousands of fans. "She's actually playing with her toys right now and has no clue that those rude people even exist!"
That night, the comment tide became so vile that Team Adalia temporarily shut down the page. The next day, Bling showed up as self-identified "friend of the family" in a four-minute video posted to the official YouTube channel, thanking supporters, but more emotively chastising negative commenters. "It's rude, it's disrespectful, and I'll let you know something—her mom is reading every single comment," Johnson said, telling the trolls exactly what they wanted to hear. He implored Adalia's fans to "help us weed out the people who don't need to be on this page," specifically asking, "Do us a favor: go into the thread and defend your point of view and defend Adalia—because this is not a joke at all."
This approach was akin to opening a garden hose on a grease fire. Facebook groups popped up with names like, "Adalia Rose should have been aborted," "Adalia Rose is responsible for 9/11," "Adalia Rose is a veiny testicle head." An arbitrary selection of archived comments: "I can't take Adalia Rose seriously, she looks like dobby the house elf" ... "Whats the difference between Adalia and a watermelon... One is fun to hit with a sledge hammer, and ones a watermelon" ... "If Adalia Rose is beautiful then my ballsack must be a model."
Edie felt responsible: she'd supplied the iPad. What had she done to this poor family? A type-A personality whose friends say "gets more accomplished in a whole hour than most people do in a day," she was so devastated she sought therapy. "As much positive has come out of it, I've personally gotten slammed by people saying, ‘Oh, you've made a circus out of this girl.' And that's not my intention whatsoever. I love this girl as if she was my own child. I'd never want to do anything to hurt her or her family, I've only wanted to help."
Cruel and vindictive messages were wrenching enough, but then they got violent and scary. "People saying, 'I'm going to find where you live. I'm gonna come to your house, I'm gonna chop you up, and rape your mother in front of you, and cut off your arms," Edie said. Natalia had been planning a Progeria Research Foundation carwash fundraiser, a benefit she promoted on Adalia's Facebook page. "We got, 'Oh, we know you're having this fundraiser, we just got our AK-47s in, we can't wait to come and blow you all up.'"
They sent screenshots to the local police, who advised canceling the fundraiser. "I'm like, ‘No, we don't cancel," Edie said. They held it anyway and everything was fine—it was all just the empty threats of anonymous ghouls.
Sometime in June, Carl Ludwig Sherburne noticed a new "bandwagon," his term for the Internet's ephemeral obsessions, cluttering his Facebook timeline. The notoriously disruptive 4chan board /b/ had seized upon some evidently sick girl's Facebook page, and with the Miami Cannibal Zombie meme dying down, the rage among his online peers had shifted to PhotoShopping this child's veiny, hairless head onto the bodies of famous monsters and extraterrestrials. People pasted her face on E.T., Roger from American Dad, Teletubbies, Land of the Lost Sleestaks, Gollum, Mini Me. There were so many different juxtapositions of this Progeria Girl, as Sherburne would come to call her, that he would start collecting them, like virtual trading cards, and eventually amass more than 500.
A 22-year-old McDonald's maintenance man with a lisping stutter, Sherburne was once a dedicated troll. He'd clocked a substantial amount of time lurking on /b/ and admits to partaking in the anonymous hive-mind vandalism of the Facebook Rest in Peace tribute page to Daani Sanders, an Australian 16-year-old who committed suicide after months of cyber-bullying in 2011. But he'd grown bored with the emotionally manipulative strain of troll humor, the offensive stunts purposely designed to antagonize and to outrage, and graduated to what he describes as dark humor—also politically incorrect jokes, but ones with some element, however minute, of cleverness.
That was the motivation behind "Cell," one of the 118 Facebook accounts Sherburne created in 2012, a persona adopted after a cocky character in the anime series Dragonball Z. On February 14 of 2012 he started using the Cell account to post crude cracks, dumb photos, and riffs on polarizing memes like the KONY 2012 campaign. For some reason, among all his counts, Cell was the one that caught on, steadily gaining thousands of fans through the spring.
Sherburne tried to bridge that attention across networks, reviving his dormant YouTube channel and uploading homemade videos of himself undertaking pointless challenges, like swallowing a tablespoon of cinnamon in 60 seconds or chugging Diet Coke with a mouthful of Mentos. In addition, he started filming himself staring into his laptop webcam and sputtering discursive monologues. Oddly enough, people watched.
"People loved my opinions," he later wrote online. He had lots of them, and he was willing to share: The news never shows the real story. Social-media cyber-bullying is a myth because "you can use the 'block' button." Suicide is a fair target for mockery (and trolling) because, "If they don't take their life serious enough, why should I?" (He would later inform me he attempted suicide at 16.) Sometimes he held forth on existential subjects like, say, divine creation. Immature atheists, he said, were "fucking rotten-twat-munching ass-mungles."
Sherburne used to believe in God, back when he lived with his grandmother, who raised him in the 700-person town of Grantsville, Maryland. "I talk to my dad on occasion, I don't care to talk to my mom," he told me late one Friday afternoon when I reached him over Skype, where an avatar of his round face showed up above the username "Some Faggot Named Carl." He went to high school in a place called Accident. "I hated it there," he said of North Garrett High School, where he was expelled at the beginning of his junior year. "Someone started a rumor that I had a hit list and a gun. They took me to a mental institution, took me to get evaluated, found out that nothing was wrong with me." Did he have a hit list? This is how he answers: "I was a little wannabe goth kid, I sat in the corner and cried a lot. There was nothing intimidating about me and they still kicked me out."
This newfound freedom allowed him time to care for his grandmother—his grandfather passed away in 2005 and confusingly left all the money to his previous wife; Sherburne's suicide attempt came in the aftermath—and to get a full-time job at a local McDonald's, where he worked until this past January, when he quit after almost six years. It also left him time for the Internet.
On June 2 last year, he uploaded to his YouTube channel a Beavis-and-Butthead-style reaction video of him and a friend drinking beer and watching "1 Lunatic, 1 Icepick," gory footage of the now-indicted murder suspect Luka Magnotta allegedly decapitating a man, then feeding the body to a dog, while a New Order song played. The New York Observer's tech blog Betabeat ran a screenshot of them watching the snuff film. Sherburne was thrilled, later writing online, "That was an exciting experience knowing that I hit the news and I was proud of it, I won't lie."
By July, Cell had accrued more than 50,000 Facebook fans, most of whom were teenage boys and assorted oddballs. "I had a lot of Australian fans, but most of them were around 17 and 20. Then I had the occasional 12-16 year olds who had a Facebook and were a fan," he said. "They're average people: I don't see many jocks that're fans of my page, I don't see many preps. They're more people who seemed to have their own personal flaws—misfits—and problems. I guess they find me relatable, since I'm unconventional and down-to-earth, and there's not many good qualities about me except that I speak my mind."
On July 6, after weeks of being bombarded by Adalia Rose, Sherburne weighed in with a video rant entitled "Progeria Girl." He defended the use of "morbid humor" and admitted that he'd laughed at seeing her head swapped onto the bodies of Dragonball Z Saibamen, green bulbous humanoids whose skulls spit acid. "You can joke about anything as long as you're not truly serious about it," he told the camera. If people were upset, they should blame the child for being on Facebook. "If she wasn't 'like'-whoring herself out, this probably wouldn't have been noticed."
One week later, Sherburne uploaded another Adalia dissertation, but his tone had shifted from critical bystander to outraged whistleblower. His target was Adalia's mother. It was unclear precisely what had set him off, but he accused Natalia of soliciting donations for Adalia's medical treatment and keeping the money for herself. He alleged that Natalia was so desperate for attention, she'd be the type of person who would feed a healthy baby mercury to give the child leukemia.
After Adalia's passing, he said, the only online trace of her existence would be these cruel images. "You know whose fault it's gonna be? It's not gonna be the millions of people on the Internet who looked at them. It's gonna be yours for letting these pictures escape," he stammered, as if Adalia's baby photos were leaked documents. "You are a sick woman. You are more disgusting and horrible than my fat disgusting ass could ever be." He was nearly spitting. "You are one stupid bitch."
Among a certain juvenile-minded segment of Facebook trolls, Sherburne had assumed a role that fell between town crier and pundit. "Since I have such an enormous reach," he said, "I could use it for her or against her." He challenged her to contact him directly, assuming she wouldn't bother.
The viral fronts had converged, to form what was in retrospect a perfect online storm. The same Friday Carl Sherburne published his first "Progeria Girl" lecture, Bling Johnson posted the YouTube pitch he'd planned, asking for donations to buy Adalia Rose a house. The fundraising target was $350,000.
In the eight-minute segment, which also would air as part of The Bling Johnson Show's second season, the host narrated his fateful visit to Adalia's home, showing footage of him and a joyous Adalia horsing around, doing push-ups, facing off in a staring contest (she won). Sitting in front of a Let's Get Famous logo, Bling recalled the initial surprise of learning that a family of four shared a one-bedroom rental. "It was a very clean apartment," he said. "But it was also very small."
The camera grazed upon the family's yard, a miniature garden choked by a minor slab of patio under communal stairs, and then the modest living room of two brown utilitarian sofas where "Ice Ice Baby" had been filmed. Bling seemed most concerned that a converted dining area served as Adalia's makeshift bedroom.
Although Bling seemed sincere, the segment sent conflicting messages. Adalia was blithe, giggly, and exuberant, but the score was a treacly, heartstring-tugging instrumental. Bling showed the family receiving their new car, eyes closed, in an Extreme Makeover reveal; Natalia and Ryan's appearance implied that they were knowing participants in this house fundraiser.
"The biggest misconception about that video is that the family had anything to do with it—they didn't," Bling told me. "They didn't ask me to do it, they're not trying to get anything, to this day, they're not asking me for anything."
The $350,000 amount, he said, was meant to cover the sale, closing costs, furnishings, and a year of property taxes. "The only thing that I would probably do differently would be not to put an actual dollar amount, " Johnson said. "I would probably just leave that open-ended. Aside from that, it's still an accurate portrayal of what I was trying to get across. I was trying to tell people a story, get their attention, tie some emotion to the video, but in a way that's real."
Also in the video, Bling coaxed Adalia to address herself directly to Ellen DeGeneres, and to say how much she wanted to visit the television-show host in California. Adalia, ever the dutiful cheerleader, cradled her knees, smudges of red lipstick smearing the lines of her mouth, and chirped, "Ellen. ‘I can't wait to see you! So much!'" For an earnest fundraising effort, this gesture lent the video an element of fame-grabbing opportunism, as if a house would be cool, but a date with Ellen would be a nice consolation prize. The YouTube video, which doesn't have ads, has accrued more than 800,000 views.
Now the trolls had a moral excuse, retroactively, for their behavior. They were claiming the high ground: Adalia's mother was exploiting her daughter. The family was doing this for the publicity. They wanted fame. By allowing her daughter on Facebook, Natalia was to blame for the cruelty of strangers. All she wanted was a house. All she wanted was money.
It wasn't just Bling's pitch that lent critics ammunition. At the beginning of June, when the Facebook page first exploded, Edie Henry had set up a GiveForward fundraising account, where the sudden influx of strangers clamoring to donate could help fulfill Adalia's dreams—visiting a Florida beach, meeting Barney, a trip to Disney World (which would later be fulfilled by Make a Wish)—and set the fundraising goal at $4,000. Then on June 19, Natalia posted a note announcing a newly instituted post-office box as the only way to get in touch with the family, but also specifying Adalia's clothes sizes and that "ANYTHING AND EVERYTHING can be sent to her p.o box—toys, letters, donations."
The administrator of the 493-member Facebook group, "Kill Adalia Before It Lays Eggs" cited that update as evidence that Natalia was a hypocrite looking for handouts. "She is asking for a home, she wants donations, and she's also lazy she should be looking for a job," the anonymous moderator wrote me. ("That's one of the 14-year-olds you're talking to," Carl Sherburne guessed, when I told him about the conversation. "I have not met one person over 15 who runs one.")
No one in Team Adalia had ever confronted anything, even remotely, like the peculiar troll logic by which the unthinkable becomes the irresistible. These were not people who'd previously had any occasion to hear the phrase, "Don't feed the trolls." So when troublemakers started editing Adalia's videos—synching her "Get Silly" jig to "The X-Files Theme," splicing 9/11 burning-tower footage into a clip of Adalia driving her toy car—Natalia had Adalia, who's mostly been shielded from all this, address her tormentors: "My mommy's been telling me that you are taking my videos," Adalia said, laying it down for the camera. "I'm gonna stomp you right now," she sassed. "Jesus is watching you." (Team Adalia has since removed this video.)
The trolls had been thrown a bloody carcass.
Helpless, Edie, reached out to her friend Rebecca Price, a young mother whose husband Adam had co-founded a social-media marketing firm called SpeakSocial. The company offered to advise Team Adalia pro bono. Even with the City of Austin on its client roster, SpeakSocial had never handled anything like this. "At one point with Adalia's page, she was adding upwards of 300,000 people at a day," said Andy Gonzalez, the company's director of community management. "It would be nothing for us to just sit here in the office and within an eight-hour period, we'd see 90,000 people liked it. Literally, just pouring in, second after second."
The pace of growth was astonishing, but so were the sadistic levels of enthusiasm demonstrated in the savage attacks against Adalia and her mother. What began as a 4chan gag was now omnipresent on Facebook, YouTube, Tumblr, Reddit, Blogspot.
"The goal was just to put a tourniquet on this thing and to try to understand the people we were dealing with," Gonzalez said. First order of business: Stop Feeding the Trolls. Second, assign a team of administrators to moderate the page. (Currently, 14 volunteers in time zones around the world, in locations like Jamaica and Australia, monitor Adalia's Facebook page.) Third, publicly set the record straight.
"A lot of people thought that somehow Natalia was making all of this money off her daughter and tainted Natalia as a money-hungry person," Gonzalez said. "I can tell you from experience, she is a wonderful woman, a wonderful mother, and—look—they ain't making money, I'll tell you that much." If her camp really wanted to make money, he noted, they could easily partner with YouTube and reap the dividends: Team Adalia's official YouTube channel hosts only eight videos, but currently has more than 4.3 million total views.
Things reached a particularly gruesome crescendo at the end of July, with an Adalia Rose death hoax. Rumors spread that she'd died, R.I.P Adalia pages sprung up, supporters offered their condolences on Tumblr. Natalia was forced to log onto Facebook, to debunk rumors that her daughter was dead. "NO ADALIA HAS NOT PASSED AWAY!!!!" she wrote on July 27. "She is healthy and happily sleeping in her bed having sweet dreams!"
"The leaders of these trolls, so to speak, were the ones who were really sharing this absolutely false and negative information about Natalia," says Gonzalez. So Natalia decided to confront the troll leaders.
The first one she reached out to was Spike Spiegel, a since-vanished online antagonist with a handle chosen after a Cowboy Bebop character, who'd also maligned her in a YouTube diatribe. Their conversation changed Spike's mind about her intentions, so Spiegel recommended she talk to Carl Sherburne, and advised Sherburne to hear her out.
The two connected on Skype. Natalia was only two years older than Sherburne, but there was a generation's worth of difference between them. "That was one of the toughest conversations of my life," he told me. He expected an argument and prepared a note card. "I was just surprised at how calm she was with me—if I was in Natalie's shoes, I would have snapped."
Natalia called Adalia into the room briefly to introduce her to the strange man on screen. The girl bashfully said hello, her voice so high-pitched that Sherburne couldn't understand the words. "It was awkward," Sherburne said. "After having a collection of 500 pictures of her, it's like meeting a mini-celebrity: 'I have hundreds of pictures of you, but you can't see any of them.'"
Natalia was very nice, she just wanted to understand why he believed such terrible things. Sherburne wanted to know where the money for all those mysterious donations went. Natalia told him she'd given it all to the Progeria Research Foundation. He mentioned the rumors that she'd gotten a new house, which "set a lot of people off." Natalia carefully rebutted that claim. "Every question I had, she had a reasonable explanation, which shut down a lot of my arguments."
Sherburne swears he was brutally honest. "I said, 'Natalie, I don't want to say it like this, but this is the only way it's going to sink in: Whenever you're putting pictures of your child and letting her dress up, and putting videos of her dancing, you're presenting your child with Progeria like it's a freak show.' I know that struck a chord with her."
Sherburne's attack on Natalia had been a boon to his social-media profile. By early August, his Facebook fan base reached 150,000. His YouTube channel, which he'd been updating regularly since the original "Progeria Girl" clip, was approved to monetize. Someone even used his rant as the vocal track for a homemade electronic-dance beat.
On August 8, Sherburne published a new Adalia Rose video: "I want to admit I was wrong," he said into the camera, looking a little greasy. The seven-minute clip was half clarification, half apology. His accusation that Natalia had absconded with the medical donations was a "completely absurd comment." It was uncalled for to have suggested that Natalia would feed a healthy child mercury, he said, visibly chagrined. At Natalia's request, he also made the video of him calling her a "bitch" private.
He did remain steadfast in his conviction that Natalia should never have posted videos of Adalia dancing online in the first place. "I don't think she's exploiting her," Sherburne told me. "She's an antihero I guess. She's trying to fulfill her daughter's wishes, but receiving the hate for it."
He said he felt like a kindred spirit to Adalia. "Her daughter wants to be noticed," Sherburne said. "Her daughter is a six-year-old version of me."
The day Sherburne's retraction went up, Natalia posted it to Adalia's Facebook page. Coincidentally, that was Sherburne's first advertising-enabled YouTube video, and traffic on the monologue spiked immediately, getting more than 100,000 views and earning him a check of about $200. He'd accused Natalia of profiting from her daughter's illness and now he was cashing in himself.
"It's funny how everything just worked out there. Because I bitched about it," he said, half-laughing, over Skype. "Then I ended up getting money out of it. I've already claimed myself as the Internet's biggest hypocrite, so you can point that out if you need to." The Adalia Rose correction address remains the most popular of his 154 videos.
Cell's fan base ballooned to 300,000 likes by mid-December, so Sherburne tried out a link-exchange program that brought him $2,700 in one week. This revenue allowed him finally to quit McDonald's. On January 8, though, Facebook took down Cell's page without explanation. But by then, Sherburne had managed to parlay his social-media acumen into a full-time job; for the last month, he's been marketing funny phone hotlines.
Meanwhile, his new fan page, Carl Ludwig Sherburne, already has nearly 90,000 fans. "I'm gonna keep rebuilding my name until, I hope, a million," he told me over the phone yesterday. "If Facebook takes me down, I'm not going to quit. There's nothing else to do in this world."
This past November, I flew to Texas on my own dime, spent a total of 17 hours and four minutes in the state, and slept in a rental car, just to meet Natalia and Adalia Rose. They tend to have this effect on people. I learned about Adalia last July, when my 19-year-old niece—who doesn't read books, loves Cake Boss and Teen Mom, and has never heard of Rookie—liked her Facebook page. The fact that someone who 'likes' Dunkin' Donuts and Chili's and Facebook on Facebook was an early adopter of a little girl with no national-television exposure and millions of followers suggested that something unusual was going on.
Ever since, I'd been watching Adalia's situation unravel online, and wanted to write about the child and her young mother in reality, apart from the Internet's fictions. Since the death threats, Natalia had made it purposely difficult for strangers to reach the family. The only contact information on Adalia's Facebook page is a post-office box, so last October, I mailed a typed letter introducing myself and explaining my interest. I never heard back. I'd emailed Rebecca Price and phoned the Progeria Research Foundation, but neither inquiry led anywhere.
After all the appalling demonstrations of human behavior the family had witnessed, I understood that Natalia might be skeptical of allowing a reporter around, so I hoped showing up might make me seem like less of a stranger.
There was no shortage of strangers already. In September, a 99-cent single called "The Adalia Rose Song" had appeared on iTunes, the work of a raspy country-rapper performing under the name Mini Thin. Mini Thin—an ex-con and recovering alcoholic named Jason Mallas from West Virginia—assumed the voice of Adalia: "Beauty's on the inside/It's not fortune and fame/So if you flip me inside out/I'll put these models to shame." ("I cried when I wrote it," he told me later, over the phone.) He proposed a video, with him and Adalia, and a link to the song on Adalia's Facebook page: 50 percent of the revenue for her, 20 or 30 percent for progeria research, and the rest for his own Hillbilly Murda records. Eventually, Natalia told him not to call anymore. She wasn't interested in helping make anyone famous.
Now, in Texas, Adalia and her family were scheduled to be at "Abstract Austin," a one-night gallery fundraiser. It was put on by a nonprofit event-planning firm co-run by Rebecca Price, who'd introduced the family to their SpeakSocial defenders. Price had seen that the family was struggling financially: They'd vacated their one-bedroom apartment and moved in with Adalia's grandmother. (Bling Johnson's $350,000 fundraiser had flatlined at $9,952.)
Price had built the fundraiser around helping the family. But then Natalia called her and said she would refuse the money. Price told me, "Natalia is like—this is what made me fall in love with her—'As much as we need this money, I don't feel right about it. I don't just want it to go help my daughter, I want it to help all the kids with progeria. It needs to go to the Progeria Research Foundation—they're the ones who are ultimately gonna help her.'"
The fundraiser was on a Friday. The Monday before, Natalia and Adalia had gone on KVUE television, Austin's ABC affiliate, to promote it. Natalia was wary of doing TV. She'd seen a 2010 episode of 20/20 in which Barbara Walters asked a 13-year-old British girl with progeria, Hayley Okines, to contemplate her own death.
"They say to the kids, 'Are you afraid of dying?'" Edie said. "Natalie is like, ‘I would punch somebody in the face if they said that to my five-year-old daughter.'"
The KVUE segment required no punches. The questions included "What's your favorite thing to do?" Still, anyone who imagined Natalia to be a calculating famewhore would have seen her visibly ill at ease. Even the exuberant Adalia shrunk back from the dialogue, nuzzling against her mother's chest. "You don't know me, Adalia," anchor Yvonne Nava said, "but I already know who you are because you're so popular." Adalia stared at her and blinked. A minute later, she sneaked a quick nose-pick.
On Friday, a framed portrait of Adalia Rose—fuchsia knit cap, zebra-print tunic, coy expression—welcomed visitors to an upstairs gallery in an art-studio building. The entrance fee was $15, and there was art for sale. The gallery labels mostly doubled as promotional materials for the participants' services: wedding photos, graduation portraits, pet photography. Lithe models glided around the room, one of them painted all over in midnight blue and topped with a feathered headdress. Children scampered in the corners. There was heavy consumption of cake pops.
A friendly stranger, who turned out to be the father of a teenage photographer, introduced himself and his wife. I told him I'd traveled to see Adalia. "What's the situation?" he said in a careful whisper. "Does she have cancer?"
Right around seven o'clock, the guest-of-honor arrived—borne in her mother's arms, wearing a dress with a zebra-print top and a pink tutu-like skirt. Ryan, his button-down tucked in, had Marcelo. A few people, including two of the models, approached the family. The rest of us stole casually furtive glances, as if watching the entrance to a VIP room.
"When people meet Adalia, it really is like they're meeting some sort of celebrity," said Andy Gonzalez, who spent the night chasing his three-year-old daughter Adora. Adora was starstruck herself, meeting this famous Adalia, whose videos she's watched so many times. She touched Adalia's arm to make sure it was real. "She was talking about it for days after that," Gonzalez told me later. "She'd be like, 'Daddy, 'member we saw Adalia?'"
When I eventually approached Natalia, she seemed intrigued that I'd flown in, but not impressed. She and Ryan had been admiring one of the photographs, and he immediately drifted off in the wise way one does when letting their partner handle business. Her first question was perfectly blunt. "I ask everyone this: ‘What's your motivation?'"
Here's what I wanted to say: That I was there because Natalia's story was, actually, one in four million—rarer still, she was one of the youngest American parents to have a child with progeria—and I wanted to hear her experiences. I wanted to know what it must've been like to be 18, when you'd only been able to vote for less than a year, and realize there was virtually no parenting model that applied to your situation and the only pop-cultural reference points were insults like Benjamin Button or the Robin Williams movie Jack. I wanted to know the best thing a compassionate stranger could say. And what it was like to have Barbara Walters bleat that she didn't know how mothers like you found the courage, as if there was another option. I wanted to ask what it was like to watch this all play out on the Internet, where your parenting choices would be attacked by 14-year-olds, and to have to clear your name with a McDonald's maintenance man whose greatest accomplishment has been gargling Mentos and Coke.
I said something else: That I didn't think her story was sad. Unfortunate, yes, but that I imagined when people pitied her, that must be annoying. She grimaced. "I hate that."
A middle-aged woman with a cane and an Eastern European accent interrupted us, practically pushing me aside.
"Is she a happy girl?" the woman asked, wincing out a smile.
"Oh yeah," said Natalia. "She's out there now. You see."
The woman drew out the awkward pause. "Does she have a lot of energy?"
"Oh yeah. She stayed up so late last night!"
I left and Natalia returned with Adalia in her arms, willing to listen. In person, she is tiny and exotic and bashful. She is used to invisible audiences and theoretical friends, so all these new faces were overwhelming. Her pink cowboy boots dangled from her twiggy legs and I said I liked them.
"She said she likes your boots."
"Thank you," squeaked Adalia.
I handed Natalia an envelope with a profile I'd written of musician Kalyn Heffernan, a 25-year-old 56-pound queer rapper with the brittle-bone disability Osteogenesis Imperfecta. I'd mentioned how when Kalyn is labeled an "inspiration," she sort of shrugs. People think it's a compliment, but she once explained to me that such a comment presumes she should be sequestered away in a room, not in a six-year-relationship with an able-bodied girlfriend, not going onstage in front of people, not doing what anybody else with her interests and preferences and talents would do. People call her an "inspiration" because she exists in the world? That makes her sad for them.
"You have no idea how much I hear that," Natalia said, rolling her eyes. "But that's what I don't get," she said. "We're not the only family."
"I'll be in touch," she promised, declining to give me an email or phone number. She would not be.
The event was winding down. The DJ cued up "Ice Ice Baby"—for Adalia, he said. Edie, who'd been carrying Adalia, lowered her tiny best friend to the floor for her big number, the dance sensation. But it was all too much pressure and Adalia just crumpled to the floor. She was five years old, and it had been a long day.
Photos via Facebook.