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

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