Court Battle to Free American Teen With Rare Disease From State Custody

Court Battle to Free American TeenA year after their daughter was taken into state custody and admitted to a psychiatric ward against their will, the court battle to free American teen, Justina Pelletier continues. While she has still not been reunited with her family, the 15-year-old, who has suffered from a rare disease for four years, has been removed from the hospital where she was incarcerated, and taken to an alternative facility. The next custody court hearing is on Thursday.

Both Justina and her sister Jessica were diagnosed with the rare mitochondrial disease several years ago, Justina when she had surgery to have her appendix and a wrap of cartilage removed from around her colon. A rare condition, mitochondrial disease mainly affects muscles, the brain and heart, and in a devastating manner. Although the family live in Connecticut the two girls were treated by Dr. Mark Korson who is based at the Tufts Medical Center in Boston, less than three hours drive from their home.

Justina was responding well to treatment, and videos posted on Facebook by her family show her performing a beautiful ice skating routine just six weeks before she was hospitalized. In February last year she became ill with what has been identified as influenza, which made her dehydrated. Dr. Korzon was not available and so her parents, Lou and Linda Pelleier, had her admitted to the Boston Children’s Hospital.

The day after admission when they went to visit their daughter, exactly a year ago on February 11, 2013, the Pelletiers were confronted at the hospital by a psychiatrist and a neurologist. The medics maintained that the condition they claimed their daughter had, did not exist and that she in fact was suffering from Somatoform Disorder, a mental condition that is related to stress. Worse, they accused the girl’s parents of “needlessly harming” their child with unnecessary procedures, and excessive medication. They said the family’s involvement in her future care would be strictly limited, and they were not permitted a second opinion.

When the Pelleiers said they were taking Justina to Tufts for an appointment that had been pre-arranged with Dr. Korzon, social workers were called in, and the hospital had a judge rule that the Massachusetts Department of Children and Families were made custodians of Justina. The court battle to free American teen, Justina, a fun-loving girl with the rare mitochondrial disease, from state custody had begun.

According to the Mito Action support group, it is not unusual for parents of children suffering from this rare disease to be accused of child abuse. Nor is it unusual for patients to be accused of feigning pain or suffering from some type of psychological somatization disorder. Officially, Somatoform Disorder is said to be related to anxiety, although it is accepted that patients feel real pain. Like fibromyalgia, chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (ME), the disease cannot be explained medically.

While the family has been permitted to visit Justina, hospital staff or social welfare supervisors are always present. Her sisters report that she believes she will never go home and will die in the hospital. They say she is terrified. Her condition has deteriorated badly, and she is said to be in a wheelchair, and suffering from paralysis below her hips. According to her family, she is not getting any medication or schooling.

When the Pelletiers instituted court proceedings against the hospital, in a court battle to free American teen, Justina, and attempt to regain custody of their child, the court imposed a gag order that prohibited them from talking about the case. In December they lost their rights in terms of a second opinion hearing. In January the court agreed that she be released from the psychiatric ward and transferred to the Wayside Youth and Family Support Network in Massachusetts.

Devastated that their daughter was still not reunited with them, Justina’s parents agreed to “talk indirectly” in spite of the gag order. “Somebody has to defend her,” her father told the media. He said they would continue the court battle to free American teen – their daughter, a desperate young girl with a horrible, misunderstood, rare disease, that he is convinced has been “used as a guinea pig for medical experiments.” On Thursday they hope that she will be released from state custody.

By Penny Swift

Fox CT
ABC News
Foundation for Mitochondrial Medicine

23 Responses to "Court Battle to Free American Teen With Rare Disease From State Custody"

  1. Kelly   March 24, 2014 at 12:09 pm

    This is her friend, Kelly Fortin. I am her best friend.

    • John Buettner   March 24, 2014 at 7:13 pm

      We’re pulling for your friend, Kelly. We desperately want to see her back home where she belongs.

  2. B Smith   February 28, 2014 at 9:55 pm

    As a Healthcare Provider I would suggest a wait and see approach to this situation. To totally ignore the possibility of the diagnosis provided by the Psychiatrist as being fact would mean recommitting this young girl to a life of mental instability and possible abuse.

    Parental child abuse may occur in different forms and if this is one case then the professionals charged with making this determination have done their duty.

    How shocked and dismayed would we be if this child was returned to her parents and a much more unfortunate event took place as a result. We might then be quickly ready to put the blame at the feet of the professionals that ignored or misdiagnosed the signs.

    • John Bit   March 1, 2014 at 8:58 am

      The psychiatrists have been inflicting their “cure” on this poor girl for a year and her health has steadily deteriorated. How much longer would you have proper medical treatment withheld from her, “just in case” she has a somatoform disorder?

    • Concerned   March 1, 2014 at 9:47 am

      The psychiatrist have been “treating” this poor girl for a year and her health has steadily declined. How much longer would you have them withhold proper medical care, “just in case” she has a somatoform disorder?

  3. grace carreiro   February 26, 2014 at 9:25 am

    he said that there was going to be a vigil on sat i need more info. so i can attend, it was wrong in schiavos case and i was too far away though im in maine, i want to be at that vigil on sat, who do i contact to get info. ???

    • John Bit   February 26, 2014 at 11:17 am

      Address for the prayer vigil:

      Saturday, March 1, 2014
      12:00pm until 2:00pm in EST
      Shared Living Collaborative
      117 E Main St # 1, Merrimac, MA 01860

    • John Bit   February 26, 2014 at 11:25 am

      To see any updates:

    • John Bit   February 28, 2014 at 7:24 pm

      The location of the vigil has changed:

      Address for the prayer vigil:

      Saturday, March 1, 2014
      12:00pm until 2:00pm in EST
      Wayside Youth and Family
      1 Frederick Abbott Way
      Framingham, MA 01701

  4. Rose   February 21, 2014 at 5:11 pm

  5. Rose   February 21, 2014 at 5:05 pm

  6. John Buettner   February 19, 2014 at 9:31 am

    The courts issued an injunction preventing the Pelletiers from talking publicly about their daughter in the context of the case. This gag order was issued on Nov. 7, 2013, 7 months AFTER the start of this incident and only AFTER a media investigation by WTIC-TV in Connecticut. What are they trying to hide?

    • justinreilly   February 20, 2014 at 6:05 am

      John, I agree. As a former attorney I think this gag order is completely inappropriate especially since it is unlikely a jury will be involved and this case is not a criminal case, but instead about the unlawful and immoral incarceration of a girl with a serious disease, i.e. it’s about the girl’s human rights.

  7. John Buettner   February 19, 2014 at 9:24 am

    There is a gag order in place, preventing discussion of the details of this horrible situation. The injunction preventing the Pelletiers from talking publicly about their daughter in the context of the case was issued on Nov. 7, 2013.

    This gag order was put in place seven months after the start of this case. It was only instituted AFTER a TV station in Connecticut investigated (

  8. justinreilly   February 18, 2014 at 11:22 pm

    So I am clear, please delete the statement that ME, CFS and Fibro “cannot be medically explained.” Thank you.

    • John Buettner   February 19, 2014 at 9:08 am

      I believe that there are indeed medical explanations, but they are being ignored or possibly even suppressed by the CDC.

  9. justinreilly   February 18, 2014 at 11:21 pm

    Thank you for writing about this important issue. I do want to clarify that some medical sources do claim that CFS, ME and Fibromyalgia are ‘medically unexplained’, however this is inaccurate. The etiological cause (such as a virus or toxin) has not been agreed upon for these diseases, but much of the pathophysiology is known and accepted by mainstream medicine, just as in many other diseases which are not considered “medically unexplained” such as Multiple Sclerosis and Alzheimer’s.

    You also take it one step in the wrong direction by claiming the diseases “cannot be medically explained” which is even more inaccurate. These inaccuracies lead to just the sort of severe iatrogenic (physician-caused) morbidity (illness) that you are reporting on in this article.

  10. John Buettner   February 13, 2014 at 5:10 pm

    Has anyone heard anything? Wasn’t today the day she was supposed to be back in court?

  11. John Buettner   February 12, 2014 at 10:57 pm

    I can’t believe this is happening in America. This is a witch hunt and it must be stopped. This sets a horrendous precedent; your child might be next!

  12. Noreen Murphy   February 12, 2014 at 3:31 am

    How did psychiatrists obtain so much power?? It’s not like they have evidence – they have their theories and their beliefs.
    This is appalling!! In my opinion, it’s also serious abuse of power.

    Many proper doctors will admit that they don’t know everything. But, just because medicine cannot explain something, does not mean that it’s a psychiatric illness. Look at the way people with MS (Multiple Sclerosis) were treated initially – that is, until medicine caught up.

    Who would have thought that the likes of this, and Karina Hansen’s case in Denmark, could happen in supposedly ‘civilised’ countries??!!! Of course, it happened to Sophia Mirza in the U.K. too, until her mother got the order reversed through the courts. By then, the damage was done and poor Sophie died at age 32.

    It’s beyond time that psychiatrists took their noses out of illnesses that do not concern them. Their “God Complexes” are causing serious damage to physically-ill patients. Besides monetary gain, many of them are becoming famous. There has to be a payoff!!

    SHAME on all. It’s time that common sense prevailed.

  13. Ess   February 11, 2014 at 6:42 pm

    I hope that ‘sanity,’ ‘human rights,’ justice and appropriate medical care will soon prevail over this INSANITY–right here in our own back yard. These are horrific examples of how ‘a system’ has gone far off the rails. With all best wishes to these compromised young ladies in ‘captivity’ and their families–what a nightmare to have been enacted upon them–and to find themselves living in–21st century free world countries–UNthinkable. 🙁

    Thank you for sharing this tragic story for the world to know.

  14. Patricia Carter   February 11, 2014 at 4:23 pm

    This is a terrible situation. Boston Children’s Hospital has imprisoned this girl in a psychiatric hospital, saying she is not suffering from a physical illness but is instead is suffering from a psychiatric illness, even though her regular doctors say she definitely is suffering from physical illness. This situation should warn Myalgic Encephalomyelitis (M.E.) patients in the U.S. that it can happen here, just as Karina Hansen is being imprisoned in Denmark in a psychiatric hospital because she suffers from M.E. It could happen to any of us.

    Thank you, Penny Swift and Guardian Liberty Voice for making this situation known.

    Patricia Carter


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