Who is Justina Pelletier?
What is Mitochondrial Disease/disorder?
How did Justina Pelletier come to be treated at Boston Children’s Hospital?
What happened to Justina Pelletier at Boston Children’s Hospital?
Did Boston Children’s Hospital perform research or experiments on Justina Pelletier?
What is the truth behind the conflicting reports about Justina's wheelchair?
​What happened to Justina at Wayside?
What happened after Wayside?
Who is Marty Gottesfeld?
What was Martin Gottesfeld’s involvement in the Justina Pelletier case?
Why did Martin Gottesfeld write Parentectomy and what is it about?
Now that her ordeal at Boston Children's Hospital is over, what does Justina Pelletier want?

WHO IS JUSTINA PELLETIER?
Justina Pelletier is a teenager from a middle class West Hartford, CT family. She was attending a day school for children with learning differences and ice skating prior to her admission into Boston Children’s Hospital (BCH.) She has three older sisters. There is no history of child abuse or neglect in the Pelletier family, in fact, as well we’ll see, quite the opposite. Unfortunately, Justina and one of her older sisters have both been diagnosed with mitochondrial disease. These diagnoses were carefully arrived at by Dr. Mark Korson through biopsies, DNA tests, and clinical observation. Dr. Korson is a renowned mitochondrial disease expert and at the time was the chief of metabolism at Tufts Medical Center.

 

WHAT IS MITOCHONDRIAL DISEASE/DISORDER?
Mitochondria are a part of nearly every living cell. They are responsible for producing the chemical energy the body needs to function. Mitochondrial disease, sometimes called “mitochondrial disorder,” is a set of specific, chronic, and sometimes fatal conditions affecting the cell’s ability to make energy. According to Dr. Richard Boles, medical director for Courtagen Life Sciences and a practicing physician, said n an article for ABC News. “The symptoms can affect any part of the body…It can cause just about anything. People with mitochondrial disease can have diabetes, autism or other types of retardation, seizure disorders or migraine, chronic fatigue or intestinal failure...People with mitochondrial disease have a lot of pain. Normal sensations are amplified by the nervous system.” Alluding to events at Boston Children’s Hospital, Dr. Boles told ABC, “They are not making it up. The idea of Somatoform is you are making it up to serve some need. But they are having real pain.”

 

HOW DID JUSTINA PELLETIER COME TO BE TREATED AT BOSTON CHILDREN’S HOSPITAL?
In February 2013, Justina Pelletier caught the flu, which can have especially serious and severe consequences for mitochondrial disease patients. Her parents took her to a local hospital in Connecticut, but her primary managing physician, Dr. Korson, directed her family to bring her to Boston Children’s Hospital so she could see his former colleague, Dr. Flores, who just had taken a job there. Dr. Flores, the former longtime chief of pediatric gastroenterology at Tufts’ Floating Hospital for Children and Justina’s former gastroenterologist, had treated her before and knew her case.

The Pelletier family followed Dr. Korson’s advice and arranged for an ambulance to take Justina from the Connecticut hospital to Boston Children’s. Her mother accompanied her for the long and harrowing winter ride. The Boston Globe reports the ambulance fish tailed often due to the dangerous road conditions. 

 

WHAT HAPPENED TO JUSTINA PELLETIER AT BOSTON CHILDREN’S HOSPITAL?
By all accounts, Justina was never allowed to see Dr. Flores. Instead, a young neurology doctor, Jurriaan Peters, who recently finished his medical training, started to question the expert mitochondrial disease diagnosis of Dr. Korson. Dr. Korson, who had worked at Boston Children’s Hospital for fifteen years himself, is a nationally renowned metabolic genetics expert with decades of experience diagnosing and treating mitochondrial disease.

Unfamiliar with mitochondrial disease (Justina’s mother would later report that Peters told her he didn’t believe it exists,) and suggesting something along the lines of disorder by proxy (Munchausen,) Peters called in Boston Children’s Hospital psychologist Ioana Simona Bujoreanu. Less than four days into her stay at Boston Children’s and after less than a one hour evaluation with Bujoreanu, the BCH team changed Justina’s working diagnosis from mitochondrial disease to somatoform disorder, a psychological condition Bujoreanu writes papers on.

Patients with somatoform disorder experience symptoms that are real, but which have psychological origins (psychosomatic.) In order to treat Justina for this new diagnosis, Boston Children’s Hospital wanted her to stop her mitochondrial disease therapies, including her pain and heart medications. Her parents refused to consent to this new plan, knowing their daughter would suffer greatly and fearing she could die. So, they sought to discharge Justina and bring her to preexisting appointments with her doctors at Tufts Medical Center.

However, instead of leaving with their youngest daughter, the Pelletiers were stopped by hospital security and informed that the hospital was filing medical abuse charges against them with the Massachusetts Department of Children and Families (DCF,) who immediately sided with the doctors at BCH and took emergency custody of Justina. Her parents were told to show up in juvenile court the next day for a custody hearing. The Boston Globe noted that a misleading affidavit was used at the hearing, and the state was awarded custody. Boston Children’s Hospital clinicians have a term for such a power play, a “parentectomy.” In turn, Justina’s mitochondrial disease treatments were stopped and her family began to note a serious decline in her health.

Less than two months later, mitochondrial disease treatments still withheld, Justina was moved to Bader 5, Boston Children’s Hospital’s now infamous locked psychiatric ward. According to the Boston Globe, Justina fought valiantly not to go, asking to see her lawyer, but she was powerless against the hospital.

 

DID BOSTON CHILDREN’S HOSPITAL PERFORM RESEARCH OR EXPERIMENTS ON JUSTINA PELLETIER?
In their lawsuit, the family alleges that they did. After a bill, named Justina’s Law was proposed in the U.S. House of Representatives and cosponsored by thirty-two congressmen, the hospital denied that it performed any research or experiments on Justina Pelletier. Additionally, reporter Beau Berman showed on screen this letter from Dr. Mark Korson, then-chief of metabolism at Tufts Medical Center, a former Boston Children’s Hospital doctor, and Justina’s mitochondrial disease specialist:

 

“…[Somatoform] disorder is a clinical one, i.e. there is no blood test or other investigation that can prove that diagnosis. It is a clinical hunch, a best guess. The team has demanded that Justina be removed from the home and severe restrictions imposed on contact with her parents. This represents the most severe and intrusive intervention a patient can undergo, far more than a cecostomy. For a clinical hunch. Without a proven diagnosis, her diagnosis should be considered an hypothesis and the current hospitalization an ‘experimental situation.’ And perhaps that is appropriate in this situation.

“The FDA and NIH oversee clinical trials for many devices and drugs which are experimental. In order to protect the public, there is very strict scrutiny of the trials. The parameters for monitoring are determined by a group of peers unconnected to the investigators and regular reporting is required. If Justina’s admission is an experimental process to evaluate a hypothesis, what is the monitoring plan? Who is scrutinizing the process? If the hypothesis is incorrect, or partially incorrect, who is advocating for Justina’s medical condition and how?

“I am dismayed by the very opaque nature of Justina’s evaluation. I heard nothing for days when these issues were first developing at Children’s, despite being the physician who referred Justina to the Children's ER. I was concerned when Dr. Alex Flores, Justina's GI physician responsible for Justina’s cecostomy (up to that point, the patient’s most intensive medical intervention) had not been called to participate in the evaluation process until the situation had escalated. I was discouraged when the Children’s team, three weeks into the admission, had not made any effort to contact community providers and teachers who have known Justina over a long period of time. And I was disillusioned when Children’s refused to engage in any dialogue with Justina’s treatment team here at Tufts.

 “I have heard nothing from the Children’s team since the hearing at which point I provided testimony. I asked Dr. Flores yesterday his impression of Justina’s course. He told me that, “I was unable to see her due to legal restrictions. I will talk to neuro attending next week.

“So now I am writing because it feels like Justina’s treatment team is out to prove the diagnosis at all costs. So again where is the objective scrutiny? Who is asking the team on a weekly basis, for example, for specific updates on Justina’s different medical and psychological issues to gauge process. 
 
“Thanks for helping me to understand this process.

Mark Korson”

 

WHAT IS THE TRUTH BEHIND THE CONFLICTING REPORTS ABOUT JUSTINA'S WHEELCHAIR?

While it is true that Justina was having trouble walking due to the flu prior to her admission to Boston Children’s Hospital, her family would later report that her condition deteriorated, from simply having trouble walking, but being able to feel her legs, to near paralysis below the hips.

 

WHAT HAPPENED TO JUSTINA AT WAYSIDE?
With public scrutiny growing, Justina was finally discharged from Bader 5 in January 2014, after nine months in the psych ward and nearly a year in the hospital. However, instead of going home, she was instead transferred to a non-medical troubled teen industry facility called Wayside Youth and Family, outside of the city. There, despite otherwise assurances to the public, the Boston Children’s Hospital treatment plan of behavior modification and withheld-mitochondrial disease treatments continued.

Justina continued sneaking notes to her family, as her family visits and communications continued to be severely limited and tightly controlled. Community Digital News published one of her notes.

Additionally, on May 4th, 2014, Justina’s family called the authorities when she told them she had been verbally assaulted in the shower by an ill-tempered facility staff member.

Justina’s family, though still not allowed to bring cameras to document their daughter’s deterioration, continued to report that her health was in decline and that they feared for her life. In February DCF filed a motion to hold Justina’s father in contempt of court for breaking the gag order and advocating publicly for his daughter. However by March, the story had gone viral, #FreeJustina had been the number one hashtag on Twitter globally, and the national and international press had picked up the story. With an even higher level of public interest, as well as media and legal scrutiny, the contempt motion against Justina’s father and the gag order itself were dropped. ​

 

WHAT HAPPENED AFTER WAYSIDE?

After four months in the troubled teen industry at Wayside, Justina was transferred to a superior facility in her home state of Connecticut in May 2014. The limiting visitation policy was lifted, and Justina was, after fifteen months, finally able to advocate for her own freedom. She recorded her plea and it was uploaded on to Youtube

In June 2014, after a torturous sixteen month ordeal at the hands of Boston Children’s Hospital, Justina was finally freed and released to her family’s home. Her family continued her mitochondrial disease treatments, though sadly Justina is yet to recover from what Boston Children’s Hospital put her through. Additionally, the protracted legal battle drove the Pelletier family to bankruptcy. Thirty two congressional representatives from both parties co-sponsored legislation dubbed Justina’s Law aimed at prohibiting the use of federal money for medical research performed on wards of the state, though sadly it wouldn’t pass, leaving wards insufficiently protected. In 2016, as mentioned above, the Pelletiers would file a thirty-five page civil suit against Boston Children’s Hospital and four of its doctors, though no amount of money can possibly make up for what they were forced to endure.

 

WHO IS MARTY GOTTESFELD?
Martin Gottesfeld, who goes by Marty with his friends, has been a senior level technology engineer since 2003. He has consulted for Fortune 500 companies and worked for two MIT-area biotechnology startups. He is an avid computer programmer, cliff jumper, and former certified lifeguard.

With a lifelong interest in law, as well as constitutional and human rights, Marty was shocked to learn about the troubled teen industry and its horrific record (please begin at 32:59) of physical abuse (often leading to death or permanent harm,) sexual abuse, long term solitary confinement, hard labor, humiliation, cult practices, and fraud, which too often lead to destroyed families, PTSD, and suicide.

He wrote and started promoting his first petition regarding the industry immediately after happening upon its terrible and fraudulent practices. After being turned away or ignored by every level of law enforcement and professional licensing and accreditation bodies who could have held industry institutions accountable (including the FBI,) Marty was approached by members of Anonymous, who offered to help raise awareness.

In late 2013, Anonymous staged a “Twitter Storm,” reaching the number two spot on Twitter globally and generating dozens of news stories about one particular troubled teen industry program. 

 

WHAT WAS MARTIN GOTTESFELD’S INVOLVEMENT IN THE JUSTINA PELLETIER CASE?
In early 2014, Martin became aware of the custody battle for Justina Pelletier. He published some initial research about Dr. Peters to a Facebook thread, but was busy with troubled teen industry work and had faith in his local Massachusetts courts to reach the correct conclusions. In March 2014, Marty was saddened to hear that Justina was being subjected to many of the same abusive and highly damaging practices all too common in the troubled teen industry. After Judge Johnston awarded permanent custody of Justina to the state of Massachusetts despite an overwhelming level of evidence supporting her family and the mitochondrial disease diagnosis, Marty began advocating for Justina’s constitutional and human rights. A distress call was sent out across Anonymous and numerous national groups of Anons took notice.


Boston Children’s Hospital is now claiming that Anonymous took down its online donation portal and stopped clinical research at the hospital for a week during the Justina Pelletier controversy. No harm to any human being has been alleged as a result of that action (although the harm Boston Children’s Hospital has cause to many of its parentectomy victims is permanent, and its parentectomies have even resulted in death.)

 

WHY DID MARTIN GOTTESFELD WRITE PARENTECTOMY AND WHAT IS IT ABOUT?
Marty wrote Parentectomy from his prison cell to share his story with the world. It is the true story of the struggle of Marty and his wife against the powerful and abusive troubled teen industry as well as their efforts to assist in the #FreeJustina campaign. It documents the simultaneously heartbreaking and uplifting stories of survival told by the people who made it through the industry, the defiant tales of some who weren’t so lucky, and the story of the continued struggle of a small but highly dedicated group, including members of Anonymous, to end all institutional child abuse. It compiles information from many different Boston Children’s Hospital parentectomies, as well as casts a critical glance at this often scrutinized institution from the perspective of a detached child, constitutional analyst, and human rights advocate who finds much room for improvement over the hospital’s last fifty years, from Dr. Mel Levine to Justina Pelletier. 

 

NOW THAT HER ORDEAL AT BOSTON CHILDREN'S HOSPITAL IS OVER, WHAT DOES JUSTINA PELLETIER WANT?
The Boston Globe quotes Justina, “I just really, really want them to get what they deserve. And I really, really want to walk again and skate.”