BOSTON — A West Hartford couple was distressed Tuesday after leaving juvenile court, frustrated in their attempts to regain custody of their sick 15-year-old daughter, Justina Pelletier, from the state of Massachusetts.
The case was continued to Feb. 13.
The girl's father, Lou Pelletier, noted that Monday will be the one-year anniversary of Justina's admittance to Boston Children's Hospital, where she stayed through 2013. He said her condition has only worsened.
He said that Justina is now in a wheelchair and is "pretty much paralyzed below the hips."
"She's not being treated medically, or going to school," he said. "There are so many rights being broken and no one's being held accountable."
Justina was admitted to Boston Children's for symptoms that the family said were related to mitochondrial disease, a diagnosis she received at Tufts Medical Center in 2011. Doctors at Boston Children's questioned the diagnosis and said they believed her symptoms — including weakness, headaches and abdominal pain — were psychologically induced. They diagnosed her with somatoform disorder, a mental disorder.
Justina's parents maintained that it was mitochondrial disease and sought to have her treated elsewhere. But hospital officials refused and reported suspicions of medical child abuse to the state in February, according to a source familiar with the situation and media reports. Shortly afterward, the state assumed custody of Justina.
Upon leaving court Tuesday, Justina's mother, Linda Pelletier, said that Justina's school is paying for her education but that she has not received any education since she entered Boston Children's.
"She can't write or spell, and it's scary," she said.
Rob Graham, spokesman for Boston Children's Hospital, said in an email that "All patients at Boston Children's receive medically necessary care."
As for whether education is provided, he wrote, "Boston Children's provides academic support for patients who are at the hospital for extended stays, including the inpatient psychiatric unit. Coordination with patients' home school occurs to develop an individual educational plan."
Linda Pelletier also said that her daughter had had a stroke when she was young but that doctors there have not taken that into account in her care.
Judge Joseph Johnston has put a gag order on all parties involved in the hearings, which began in February 2013.
The Pelletiers said they didn't think their comments violated the gag order. "Somebody has to defend her," Lou Pelletier said. "It's not this court, it's not the state of Massachusetts."
The Massachusetts Department of Children and Families could not be reached for comment.
Also at Tuesday's hearing was Dr. Mark Korson of Tufts Medical Center, an ally to the Pelletiers. Since last year, the Pelletiers have fought to have Justina transferred to Tufts for treatment.
"I have a right as a U.S. citizen to take my daughter to what doctor I want to, and it's been taken away," Linda Pelletier said.
The Pelletiers' comments upon leaving court Tuesday were in marked contrast to their reaction after the last hearing in the case, on Jan. 10, when Lou Pelletier said "progress is being made." Sources close to the family said that the court had ordered Justina to be transferred to a transitional facility. It was the first sign that an agreement was being reached between the family and the state.
The Boston Globe has reported that Justina has been transferred to a residential program at Wayside Youth and Family Support Network in Framingham.
Health experts say mitochondrial disease is difficult to diagnose definitively. Gastrointestinal disorders, learning disabilities, and extreme fatigue and muscle weakness are among its symptoms. The disease causes the body to have trouble converting sugar and oxygen into energy.