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in science •  6 years ago 

The Hacker Who Cared Too Much

Written by David Kushner, Rolling Stone

When a programmer shut down a hospital website to defend a sick girl, he raised a crucial question: What are the bounds of protest in the digital age?

One afternoon in a modest, hilltop home in West Hartford, Connecticut, Linda Pelletier, a sandy-blond mother of four, opened a greeting card from her 15-year-old daughter, Justina. To her surprise, a small, intricately folded piece of paper slipped out from inside. It was an origami fortune teller. Pelletier poked her thumbs and forefingers under the flaps, spread them apart, then unfolded the flap that faced her. A chill shot through her as she read the message, written as tiny as her daughter’s handwriting would allow: “I’m being tortured.”

Six months earlier, Justina, a spunky petite brunette, seemed like any other middle-class, suburban girl. She collected stuffed giraffes, listened to Taylor Swift and ice skated competitively, coached by her mom, a champion skater in her own right. But then she began feeling unusually sick. She developed searing stomach pains and confounding digestive problems. It got so bad her parents took her to see Dr. Mark Korson, a metabolic geneticist then at the Tufts Medical Center. He had given her a working diagnosis of mitochondrial disease, a chronic genetic disorder that can cause weakened muscles, neurological problems and dementia.

Soon after, in February 2013, Justina’s symptoms became too much too bear, as her stomach felt like it was ripping apart. Desperate and scared, her parents rushed her through a blizzard to the best hospital in reach, Boston Children’s, the renowned teaching facility associated with Harvard. By the time she arrived, she was slurring her speech and barely able to swallow food.

But the doctors at Children’s gave Linda and Lou a shockingly different diagnosis than the one she’d received at Tufts: Justina didn’t have mitochondrial disease; her illness, they said, was in her head. The hospital told them that they were taking Justina off her mitochondrial and pain medication. Confused and reeling, the parents refused to comply. And when they attempted to check Justina out of the hospital, they were blocked by security guards. The state was taking emergency custody of their daughter under suspicions of what they called “medical child abuse” at the hands of the parents. “We didn’t even get a chance to say goodbye,” Lou later said.

Transferred to Bader 5, the hospital’s psych ward, Justina’s condition rapidly declined. She could barely walk or speak anymore, and felt like she had knives in her stomach. But the treatment she claims she endured was the most devastating of all. “I was getting worse and they didn’t believe me that I was in pain,” Justina tells me. According to a lawsuit the Pelletiers later filed against Boston Children’s, Justina was left in hallways and in bathrooms for hours at a time. When forced to walk, she would fall at times “and they would laugh at me,” she says. Her toenails were ripped out, she alleged in the lawsuit, when they pulled her in a wheelchair and her feet dragged on the floor.

Even more frightening, she was too afraid to tell her parents any of this. Their communications – limited to one 20-minute call and one hour-long visit each week – were closely monitored by hospital staff, and she worried about what might happen to her parents or her if they overheard her. Instead, she resorted to sneaking notes, such as the one hidden in the origami, to her family. After the Pelletiers began speaking out publicly about their daughter on social media and to local news, a judge ordered the family put under a gag order. “I couldn’t talk to anybody,” Justina recalls.

To the Pelletiers and their supporters, Justina had been “kidnapped,” as her father Lou put it, by the state of Massachusetts for the sake of medical experimentation. Korson, the Tufts doctor who had given Justina her original diagnosis, wrote a scathing letter to the Pelletier’s attorney on their behalf calling Children’s actions “the most severe and intrusive intervention a patient can undergo…it feels like Justina’s treatment team is out to prove the diagnosis at all costs.”

Justina Pelletier, before severe symptoms landed her in Boston Children’s Hospital.

But, according to the state, it was the parents who were the real danger. The Department of Children and Families (DCF) and Boston Children’s refuted the allegations against them. They were protecting Justina from parents who were, as one Children’s physician put it, “overmedicalizing” the girl and neglecting to give her the psychiatric treatment she needed. Taking custody was in the child’s best interest, the hospital contended in a statement at the time, because of “both parents’ resistance towards recommended treatment plans.” Children’s spokesperson Rob Graham tells me Justina’s “treatment by each of Boston Children’s providers was proper; their care fell squarely within the appropriate professional standards of care, and resulted in patient improvement.”

However, a December 2013 in-depth investigation of Justina’s case by the Boston Globe found that, in the previous 18 months, Children’s had “been involved in at least five cases where a disputed medical diagnosis led to parents either losing custody or being threatened with that extreme measure.” There was even a nickname for such custody battles, which occurred at other hospitals as well: “parentectomy.” The Globe, in a wider investigation into the DCF, found more disturbing data. More than 95 children were found to have died in state custody between 2001 and 2010.

To get help with Justina, the Pelletiers reached out to Reverend Patrick Mahoney, director of the Christian Defense Coalition, a group who had rallied around keeping Terri Schiavo alive during her controversial right-to-die case. Mahoney believed that the “government was overstepping their boundaries into personal individual freedom.” As the Pelletiers’ spokesperson, he transformed their fight into an online campaign, soliciting volunteers to help spread the word.

As publicity surrounding Justina’s case reached its height, Martin Gottesfeld, a 30-year-old computer security expert who had no relation to Justina or her family, decided to act – during one of the hospital’s biggest fundraising periods of the year. According to the indictment from the U.S. District Court of Massachusetts, Gottesfeld attacked the computer servers of Children’s and the nearby Wayside Youth and Family Support Network, the residential treatment facility where Justina was moved after Bader 5. Though no patients’ records were compromised or harmed, the hospital claimed the attack, which lasted several days and temporarily downed the website, “disrupted day-to-day operations as well as research being done.” Children’s claimed the attack cost $300,000 to mitigate, and resulted in another $300,000 in losses due to the hospital’s donation website being shut down.

But the attack largely achieved Gottesfeld’s intended effect: It put the institution overseeing her care on the defense and raised awareness of Justina’s story. The feat also landed Gottesfeld behind bars. He is currently awaiting trial inside a federal detention center in Plymouth, Massachusetts, charged with conspiracy and intentional damage to a protected computer, under the Computer Fraud and Abuse Act, or CFAA, a law written during the Reagan administration to protect government computers from “unauthorized access.”

The CFAA faces widespread criticism for being both outdated and overzealously applied. Most notably, this happened in the case of activist Aaron Swartz, the Harvard research fellow who was charged with illegally downloading several million journal articles from the online academic database JSTOR, which he reportedly intended to make openly available to the public. Though Swartz was fighting for freedom of information, U.S. Attorney Carmen Ortiz famously declared “stealing is stealing,” charging him under the CFAA with felony counts that carried a maximum sentence of 35 years and potential fines of $1 million. Refusing to take a plea, Swartz committed suicide in January 2013.

If convicted, Gottesfeld could face up to 15 years in prison and $500,000 in fines. His case, currently awaiting a trial date, has launched its own campaign and hashtag #FreeMartyG. And it’s raising an increasingly crucial question: What are the bounds of protest in the digital age?

As Gottesfeld awaits the answer that will determine his fate, I visit him on an overcast day in March. Stocky, dark-haired, in a green prison jumpsuit, his eyes redden as he clutches his black phone on the other side of the Plexiglas barrier. “I don’t want any activist to go through what I went through for trying to do the right fucking thing,” he says.

The Pelletier family, Lou and Linda crowd around to talk to Justina by phone in July 2013. Suzanne Kreiter/The Boston Globe/Getty

“Any of my fellow Bostonians down for a protest?”

It was the wee hours of December 24th, 2013, when Gottesfeld fired off this Facebook message, linking to a sensationalized article he’d found on the depths of the Internet. He was inside his darkened, ground floor apartment decorated with framed classic rock album covers – hammering at his laptop from his sagging, L-shaped, gingham couch. He couldn’t believe what he’d just read on Facebook about Justina Pelletier. When a Facebook friend limply replied about how “messed up” the world had become, Gottesfeld stiffened his back. “They only win if we give up,” he typed back.

Born Martin Karim and raised in Andover, Massachusetts, Gottesfeld is a victim of abuse himself. At age 12 – having never met his Bangladeshi father and after his mother had a nervous breakdown – his maternal grandparents, Jay and Gloria Gottesfeld, agreed to adopt him. His grandfather, a computer engineer, resented the arrangement – “I felt unwanted, like I was a burden,” Marty tells me. At times, Jay would lash out physically and emotionally. Gloria confirms his account. “It’s true, unfortunately,” she says.

But, Marty adds, his grandfather (whom he calls his father) was abused as a child at an orphanage. “He’s a survivor of institutionalized child abuse,” Gottesfeld says. “I’m a survivor of child abuse.” The point being, he adds, “I take child abuse really seriously.” Gloria recalls him frequently coming to the aid of the less fortunate, including a time when, as a young boy, he attacked a teenager who had portrayed a bully in a school play, thinking he was the real thing.

Around 1996, after getting access to a computer at his grandparents’ home, Gottesfeld felt a new sense of purpose. Soon, he was writing and selling his own utility software. His technical skills and grades got him into the esteemed boarding school Exeter, where he found like-minded peers, including a teenage Mark Zuckerberg. “We hung out in a common crowd since we were both computer kids,” Marty says. They shared what he calls “this intrinsic drive to just always code, code, code, code and code some more.” (A spokesperson for Zuckerberg confirms that the two were classmates, but says they haven’t had contact since Exeter.) After Gottesfeld got into trouble for exploring vulnerabilities in the school’s computer system, he dropped out and went into computer consulting.

On the side, Gottesfeld maintained a budding passion for human rights causes, supporting Amnesty International and Human Rights Watch. But it wasn’t until he started dating Dana Barach – a thoughtful Brandeis student with wavy long red hair whom he met online – that he found a way to fuse his worldview with his programming skills.

In July 2013, Barach visited her 16-year-old brother at the Logan River Academy, a so-called “troubled teen” facility in Utah where he’d been living since February. Dana’s parents had sent him there for the typical reasons: he was smoking pot, playing guitar late into the night and failing at school. Dana returned from Utah with allegations of gross mistreatment that struck a nerve with Gottesfeld. He says he called the Utah police, Human Rights Watch, even the FBI, but to no avail. “I was pretty much roundly and flatly ignored,” he says. But after posting about Logan River on Facebook, he got a message from someone claiming to be part of the hacker collective Anonymous: “Would you like some help?”

Gottesfeld had never interacted with Anonymous, and only knew of its “mystique,” as he puts it. By 2013, the decentralized group had become notorious for international campaigns against targets from the Church of Scientology to Middle Eastern dictators during the Arab Spring. But the Anonymous hacker (whose name Gottesfeld does not want to reveal) told Gottesfeld that he had also been fighting to liberate kids from troubled-teen centers, and that he himself had suffered a brain injury while residing at one. If Gottesfeld needed media attention on the problems at Logan River, the hacker told him, then Anonymous could deliver. “We’ll take any help we can get,” Gottesfeld replied.

Martin Gottesfeld and his grandfather, Jay. Courtesy of Gottesfeld family

The hacker, who claimed to be homeless and working only from his phone, schooled him in online activism tactics: Twitterstorms, flooding Twitter with a hashtags about Logan River; YouTube testimonials, a tearful video from a Logan River alum testifying to abuse; Facebook rebel-rousing, creating groups on Logan River and networking with other activists; an online petition to end certain practices at Logan River. “I really was pouring my heart and soul into the fight for him to the point where I basically wasn’t working,” Gottesfeld says.

Beginning in November 2013, Logan River’s website sustained distributed denial-of-service attack which, according to a later intictment, “disrupted…the website intermittently over a period of months.” Just as the Anonymous hacker had promised, Gottesfeld had succeeded in getting media attention that forced Logan River to respond. “His criticism was unfounded and his comments on social media ultimately had no impact on families who recognized the success of our program – no student has been pulled from our Academy over this malicious incident,” Logan River Academy spokesperson Caroline Luz tells Rolling Stone. (Logan River has been under new ownership since 2016).

Finally, in December 2013, Dana’s parents brought her brother back home. Though Logan River remained open, for Gottesfeld, it was a profound victory and evidence of the power of the Internet to affect social change.

Soon after, he read about a girl, Justina Pelletier, who seemed to be suffering unimaginable abuse at the hands of the state, and felt a call to action again. In the coming weeks, Gottesfeld took to her cause, spreading the #FreeJustina hashtag on Twitter. He stayed up all night pulling articles on her case, posting on Facebook and exchanging hundreds of direct messages on Twitter with potential volunteers. “So far I haven’t been sued/arrested,” he wrote to one. “I’ve been pretty careful…it’s not the end of the world though. I’m prepared.”

With the case gaining attention online, the pressure mounted. Kathleen Higgins, a former Bader 5 nurse-turned-whistleblower, wrote Olga Roche, commissioner of the Department of Children and Families, comparing the hospital’s treatment of Pelletier to “torture.” “From the perspective of the teen whose life has been derailed,” Higgins went on, “she is the ward of a state devoid of compassion and conscience, prohibited from contact with every facet of her life that holds meaning for her.”

Barry Pollack, a former federal prosecutor who served for 15 years on the Board of Directors of the Massachusetts Society for the Prevention of Cruelty to Children, wrote the Massachusetts Department of Public Health Commissioner Cheryl Bartlett demanding an investigation into Bader 5. “Among other things,” he wrote, “arrogance, professional mediocrity, and/or a rush to judgment, Bader 5 appears virtually synonymous with abuse for many children.”

On March 20th, 2014, as public outrage grew over Justina’s story, an Anonymous operation, #OpJustina, was declared, demanding Pelletier’s release. “We will punish all those held accountable and will not relent until Justina is free,” the mission statement that circulated online read. It included the home address and phone numbers of the judge and Children’s administrator overseeing the case, as well as technical information about the hospital’s computer server. Three days later, Gottesfeld posted an Anonymous-style video on YouTube warning the treatment centers. “Failure to comply with our demands will result in retaliation of the likes you’ve never seen,” the robotic voice in the video declared over an image of the American flag.

And yet the threats alone failed to deliver. Two days later, on March 25th, Massachusetts Juvenile Court Judge Joseph Johnston found that the parents had acted irresponsibly by calling the hospital “Nazis” and claiming that Children’s “was punishing and killing Justina.” Such statements, he determined, were evidence that they “engage in very concerning conduct that does not give this court any confidence they will comply with conditions of custody.” He awarded permanent custody of Justina to the Massachusetts Department of Children and Families. If the parents wouldn’t help their daughter, then the state would.

Martin Gottfield around 2014. Courtesy of Gottesfeld family

For Gottesfeld, the DCF’s decision felt like a punch to the gut – and an urgent call to hack on Justina’s behalf. “Eighty percent of my thought process was centered around, ‘I don’t want this girl to die,'” he recalls, “and the other 20 percent was, ‘OK what do I have to do technically to make this happen.'” That day, Gottesfeld crippled the website of Wayside, the residential treatment facility where Justina was being held, with a DDOS attack. He found that Children’s was fund-raising in April, and decided to wait until then to go after their site. “I’d have to hit Children’s where they appear to care the most, the pocketbook and reputation,” he later wrote. “All other efforts to protect Justina weren’t succeeding and time was of the essence. Almost unbelievably, they kept their donation page on the same public network as the rest of their stuff. Rookie mistake.”

On April 19th, he sat on his couch, The Simpsons on the TV in the background, as he waited for the website to begin going down. Gottesfeld assured himself, correctly, that patients and medical records would not be affected. But this didn’t stave off a backlash from one of the largest Anonymous social media feeds, YourAnonNews, which tweeted: “To all the “Anons” attacking the CHILDREN’S HOSPITAL in the name of Anonymous via Op #JustinaPelletier – IT IS A HOSPITAL: STOP IT.”

Gottesfeld ignored the reprimand. He didn’t need anyone’s endorsement and had all the power he needed to pull off the attack. DDOS attacks subsided within the week, and fulfilled Gottesfeld’s goal of spotlighting the case. “Though we do not know the source,” Wayside said in a statement after the attack, “we are dismayed and concerned that someone would try to disrupt the important work we do with hundreds of children and families.”

The avalanche of action over neglected children in Boston took a dramatic turn on April 29th. Following the death of three children under the DCF’s supervision, Roche, the embattled commissioner of the DCF, resigned. “I don’t have confidence at this point in the agency and I’m very worried about the agency,” then-Governor Deval Patrick said about the DCF. “My confidence in the whole organization has been rattled.”

But Justina herself would ultimately prove to be her most powerful advocate in the wake of the attacks. She hatched a plan to get her own voice – and face – online. With the help of a her older sister, Justina shot a short video of herself inside her new facility in Thompson, Connecticut and had it posted online. On June 8th, a 45-second cellphone video appeared on the “Miracle for Justina” Facebook support page. It showed Pelletier in her zebra-striped wheelchair, rubbing her thin legs, and pleading to Judge Johnston to reverse his decision. “All I really want is to be with my family and friends,” she says in a shaky voice. “You can do it. You’re the one that’s judging this. Please let me go home.”

There was no question about its authenticity. Despite 16 months of the hospital insisting that her symptoms were in her head, it was painfully clear that no amount of psychiatric treatment had improved her conditions. And, once again, the exposure online worked in her favor. Days later, on June 17th, the family received stunning news. On the recommendation of the Massachusetts DCF, Judge Johnston agreed to dismiss the case, citing “credible evidence that circumstances have changed.” (Michelle Hillman, a spokesperson for the DCF, declined to comment on the court’s decision). The next day, Pelletier’s father carried her out of her wheelchair up the hill to their front door and, at last, into their home.

“I was just so happy to be with my family again at home,” Justina says. Reverend Mahoney, the director of the Christian Defense Coalition, thanked the power of online activism with getting her back. “Giving God all credit,” he says, “this couldn’t have happened without the Internet.” Gottesfeld had one thought when he heard the news of Justina’s release: “Mission accomplished.”

Justina Pelletier is carried into her home by her father, Lou. Justina was removed from her parents' care 16 months ago after allegations of medical child abuse were raised against Lou and Linda Pelletier.

Justina returned home in June 2014. “I was just so happy to be with my family again at home,” she says. Suzanne Kreiter/The Boston Globe/Getty

Tim Wu, a Columbia Law School professor and former director of the Poliak Center for the First Amendment at the Columbia Journalism School, has described the Computer Fraud and Abuse Act as the “most outrageous criminal law you’ve never heard of.”

When the law was written three decades ago, the intent was to keep hackers out of government and corporate machines (a concern that surfaced after members of the administration saw the 1983 cyber-war movie WarGames). But with the rise of the Internet, the CFAA instead has been used to prosecute hundreds of cases that the original authors – let alone science fiction writers at the time – could not have even conceived.

The tipping point came in 2013 with the suicide of Aaron Swartz, who became a symbol of reform for lawmakers and activists. “I cried when Aaron died,” Gottesfeld recalls, in a quiet voice. But Swartz wasn’t alone, as others have been pursued under the CFAA given the law’s squirrelly definition of what unauthorized access really means. According to the Electronic Frontier Foundation, the digital rights activist group that has been fighting to reform the law, “creative prosecutors have taken advantage of this confusion to bring criminal charges that aren’t really about hacking a computer, but instead target other behavior prosecutors dislike.”

The CFAA has a long history of being controversially applied. Often, the question isn’t so much a matter of whether a criminal act has been committed, but how fairly it’s being prosecuted. In 2008, a jury found a 49-year-old mother, Lori Drew, guilty of violating the CFAA by creating a fake MySpace page to harass one of her daughter’s classmates, who tragically took her own life. The conviction, however, was overturned the following year for setting a dangerous precedent “which would convert a multitude of otherwise innocent Internet users into misdemeanant criminals,” as District Judge George Wu ruled. Matthew Keys, a social-media editor for Reuters, faced 25 years in prison for helping members of Anonymous deface the Los Angeles Times website in 2010, the equivalent of spraying graffiti on a building. Last April, under the CFAA, he was sentenced to two years in prison.

This was the landscape in which the FBI began its investigation in April 2014 into the attacks on the computer networks at Children’s Hospital and Wayside. According to an affidavit by FBI Special Agent Michael W. Tunick, investigators successfully traced the YouTube video for #OpJustina to the account of Gottesfeld, who says he hadn’t bothered covering his tracks because he didn’t believe he was doing anything wrong.

Around 6:30 a.m. on October 1st, 2014, nearly four months after Pelletier’s return, Gottesfeld and Dana were awoken by their doorbell. “They’re here,” Gottesfeld told his girlfriend, as he saw two short-haired men in suits on the security camera outside. The two men from the FBI had a search warrant related to the hacking of Children’s. As Gottesfeld let them in, they were followed by about a dozen others, who began collecting Gottesfeld’s computer equipment, taking pictures and searching the house. Gottesfeld remained calm, and used the opportunity to evangelize. “You should look into the troubled-teen industry,” he urged one of the agents.

After the FBI left with their equipment, Gottesfeld and Dana walked to a nearby park to talk, fearful that their home had been bugged. The joint they smoked didn’t ease their paranoia. Dana worried he could become the next Aaron Swartz, facing decades behind bars. Gottesfeld reassured her as best he could. “Courage is not the absence of fear,” he said, “courage is acting despite fear.” He refused to let the government convict an online activist whom, in his opinion, hadn’t harmed anyone.

So he had a contingency plan, he told her, to leave the country. Just because he was fleeing didn’t mean Dana should come too. “I can put myself in danger, but I don’t want to put you in danger,” he told her. But there was no way Dana was going to sit at home wondering if he was alive or dead. “I want to come,” she replied. One snowy day in December 2014, they drove to a courthouse in New Hampshire and got married. Then they started plotting their escape to Cuba.

Martin and Dana Gottesfield were married in December 2014, but waited until the following February to have a ceremony. Courtesy of Gottesfeld family

In February 2016, Gottesfeld found a guy outside Miami selling boats on Craigslist and made an appointment to meet him. Careful to remain quiet in case they were being monitored, Gottesfeld and Dana crammed two big duffel bags and a backpack with their essentials – including three laptops – and left the rest in their Boston apartment. Without telling their landlord, family, employers, or friends, they waited until dark to load their white Toyota and hit the road.

As Gottesfeld drove through the night, the two barely spoke. Gottesfeld vaped and flipped the radio dial for the heaviest metal he could find. Dana saw her world fisheye around her. “It doesn’t 100 percent feel real,” she recalls thinking. “What are we doing? This is crazy.” She felt terrible for ditching out on everyone without a word, and leaving them to worry. But she reassured herself that it was only a matter of time before they were safe in Cuba and able to speak with them all again. “It’s not like we would disappear forever,” she recalls.

Nearly 30 sleepless hours after leaving Somerville, they pulled into a Miami marina. The Craigslist guy lived in a houseboat and showed them several crafts. They considered a sailboat, but settled on a small white speedboat for $5,000. With the bags in the boat and abandoning their car, they took to the ocean, cutting over the chopping waves. Gottesfeld had no experience boating, and the waves were rougher and higher than either had expected. As the other boats around them faded into the vast empty landscape, Dana couldn’t help marveling. “I was just thinking about how big the ocean is,” she recalls. Gottesfeld sped as fast as they could, the cold water spraying over them.

But then, after hours at sea, their boat sputtered to a stop. Something had broken down. The two of them sat there alone, wet, cold, not knowing what had happened or why. Gottesfeld, the ad-hoc engineer, sprang into action, desperately trying to get the boat up and running again, until the moment came when he reached for the radio and put out a distress signal. They’d reached the end of their line. “I just wanted to be off the water,” Dana says. “I didn’t even care.”

The call was answered by the most unlikely of rescuers: an 11-deck cruise ship. The Disney Wonder was carrying hundreds of families past Cuba when the distress call came in. As rain poured down and violent waves lashed, the Disney crew struggled to tie the small white speedboat to the ship until Gottesfeld and Dana were safely brought onboard. “They just gave us blankets and a doctor looked at us and gave us some Gatorade,” Dana recalls.

The two were sequestered into their own cabin, with guards stationed outside their door. Aside from chaperoned smoke breaks on the deck, they spent the next two days cooped up inside. Afraid to talk openly with each other, they bided their time watching Disney cartoons and picking at the trays of cruise food delivered three times a day. “It was kind of like the calm before a storm,” Dana recalls.

After the ship docked in Miami on February 17th, and after the last mouse-eared tourist was gone, the FBI agents moved in. When they arrested and cuffed Gottesfeld in his room, the couple were wearing matching Disney Wonder T-shirts provided by the ship, since their belongings had been confiscated. They were hauled down to the police station, where Dana was question and Marty was booked. They’d never imagined having to say goodbye like this. And they had no idea if or when they’d see each other again. “We didn’t really know,” Dana says.

Prison clothes Marty wore during his hunger strike, along with pictures of Justina showing her decline while under the state’s care. Courtesy of Gottesfeld family

The next week, on the crisp blue morning of February 25th, 2016, Justina Pelletier appeared on the steps of the Massachusetts state building with her family and lawyers. Since Justina came home, she was back to being treated for the illness she was first diagnosed: mitochondrial disease. Now, dressed in tan pants, black boots and a black cardigan, she looked healthier – the product of several surgeries (including a stomach operation at Yale), and months of horseback-riding therapy – but was still confined to a wheelchair.

The family was there to announce a lawsuit against Children’s and the four doctors who helped obtain custody of Justina. (The case is still pending). They were asking for unspecified damages over gross negligence and civil rights violations. Though the family had been forced into bankruptcy as a result of the case, the suit is not about “revenge,” her father told the assembled press. “I just really don’t want this to happen again to another family,” Justina said, still struggling to speak without slurring. (“Boston Children’s is confident that once all of the evidence is presented at trial, a jury will find that our providers were not negligent and did not cause harm to Justina,” Graham, the hospital spokesperson, says).

In the wake of Justina’s release, awareness and action is growing to prevent such custody battles from happening again. “We must protect children from the rare disturbed parent,” University of North Carolina law professor Maxine Eichner, herself a parent of a child with mitochondrial disease, wrote in the New York Times opinion pages of the Pelletier case. “But medical child abuse, as it has been understood, is far too big and blunt an instrument to accomplish this purpose. It has harmed too many genuinely sick kids, and made life hell for too many loving parents.”

(A bipartisan bill nicknamed Justina’s Law, which would “prohibit federal funding of any treatment or research in which a ward of the state is subjected to greater than minimal risk to the individual’s health with no or minimal prospect of direct benefit,” was introduced in 2014 but languished before the House.)

While the Pelletiers waged their battles, Gottesfeld endured a new chapter of his own. Since being arrested in Miami, he has been charged with conspiracy and intentional damage to a protected computer under the CFAA. Though the indictment acknowledges that Gottesfeld “was concerned about what he believed were abuses at facilities,” it also alleges that he “impacted the entire Hospital community” by disrupting fundraising and compromising the communication of patients and doctors.

Given the history of CFAA prosecutions, Tim Watkins, the assistant federal defender
representing Gottesfeld, says he can’t predict how much of an example will be made of his client. And there is no telling how the CFAA will fare under the Trump administration, for which Gottesfeld’s case may be the first test. “I don’t think anyone is qualified to know what [Attorney General Jeff] Sessions and the DOJ is going to prosecute or not prosecute,” Watkins says. (The Massachusetts U.S. Attorney’s office and FBI declined comment because the case is ongoing.)

When Gottesfeld and I first spoke in September, while he was being held at the Donald W. Wyatt Detention Facility in Central Falls, Rhode Island, he sounded defeated. “Institutionalized children face human rights violations that have been going on for a long, long time,” he told me. “I’ve been an advocate for a while with this, but, from in here, there’s really not all that much that I can do.”

Four days later, he began a hunger strike until two demands were met: a commitment by U.S. Attorney Ortiz to cease what he called “political prosecutions” under the CFAA, and pledge from every presidential candidate to protect children such as Pelletier from institutional abuse. In November, over 50 days into his hunger strike, he remained just as resolved. “I will not give Carmen Ortiz a felony CFAA conviction on an activist,” he told me at the time. “that’s not going to happen after Aaron Swartz.” True to his word, he continued his strike until January, shortly after Ortiz announced her retirement.

Throughout our months of conversations and correspondence, Gottesfeld maintained this steadfast conviction. And despite his differences with his grandparents over the years, he had their support, even if they regret where he has ended up. “He was trying to help this girl, and trying to help people who had no one else to help them,” Gloria Gottesfeld tells me. “He was trying to do good, but I wish he had done it some other way.”

When he was transferred to Plymouth, however, the pain of being behind bars took a dire turn when his grandfather died from complications from lymphoma in March. A few days later, I visit Gottesfeld, who was denied his request to visited his grandfather before his death, or attend the funeral. He breaks into tears at the mere mention of his grandfather’s name. “I don’t have any regrets about what I did,” he tells me, “but the price is heavier than I expected.”

He’s hoping that by sharing his side of the story now, for the first time in full, he can raise awareness about both the CFAA and Justina’s case. And given that Trump is in office, he’s wishing that Kid Rock would write a song about Justina to get the president’s attention. “I’ve always been a Kid Rock fan,” he says.

When I ask him what he would say to Justina, whom he has never met or spoke with, emotions fill his voice. “She was very brave and she suffered and endured something that would have killed a lot of other people,” he says, “I wish her nothing but happiness and success in her life and her family’s efforts to achieve justice and to try to make sure what happened to her never happens to any other kid.”

I relay this to Justina and her family during a visit to their home, and her parents are quick to distance themselves from the hacking of Children’s. But Justina, who’s been quiet and shy during the interview, boldly speaks up. Though the two have never talked or met, she and Gottesfeld share a unique bond, and she, more than anyone, knows what it’s like to be trapped inside the system. It’s as if they’ve traded places, and now, for the first time, she can take a stand to help him get out – just as he had done for her. “He shouldn’t be in jail,” she tells me, as her parents shift uncomfortably in their seats. “He didn’t hurt any kids. He was just trying to help.” When I ask her what she would like to tell Gottesfeld if she could, she gathers herself for a moment, and then replies. “Just, ‘thank you,'” she says.

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