March 4, 2014 -- Justina Pelletier, the sick teenager who for the last year has been the center of a custody tug of war between her parents and the state of Massachusetts, will get treatment with her original doctors at Tufts Medical Center, a family court judge has ruled.
Her parents, Linda and Lou Pelletier of West Hartford, Conn., have argued that their 15-year-old daughter suffers from the physical effects of mitochondrial disease and has not been medically treated since Boston Children's Hospital diagnosed her with somatoform disorder in February 2013.
The hospital had accused the parents of medical child abuse and Justina has been confined to its locked psychiatric ward for treatment of a mental disorder.
"This is a victory, but the battle is long from being over," said Lou Pelletier, a financial planner with four daughters. "The [Department of Children and Families] is still in charge, Justina is still in a psychiatric residential facility and the child abuse charges have not gone away."
Dr. Mark Korson, chief of metabolism at Tufts University, has been an advocate for Justina, according to the family, who say they worry lack of proper medical care could be fatal for their daughter.
The Pelletiers are still fighting to regain custody of their daughter, which is expected to be discussed at a court hearing scheduled for March 17. Since January, Justina has been moved from Boston Children's locked psychiatric ward, Bader 5, to a residential facility at the Wayside Youth and Family Support Network in Framingham, Mass.
The family is allowed weekly supervised visits and must drive two hours each way from Hartford to Framingham.
"It wipes us out financially, never mind emotionally," said Pelletier. "It's David against Goliath. I am fighting the DCF and Harvard University -- and their pockets are deeper than mine."
The court case has also dragged in hearings since last November. "It's been a financial nightmare every time they delay it," he said. "do they know what these attorneys cost per hour?"
Pelletier said he would be speaking before the Massachusetts Senate later this week to make the case for his daughter.
According to the Boston Globe, Juvenile Court Judge Joseph Johnston also lifted a gag order he had imposed on parties to the case last fall. The DCF dropped its contempt-of-court complaint against the father for having spoken publicly about the case to ABCNews.com and other media in violation of the gag order.
Before the Massachusetts Department of Children and Families took control of Justina's care, she had been treated at Tufts for mitochondrial disease – a rare and poorly understood disorder that can affect every system in the body. Justina's sister Jessica, 25, is being treated for the disease under Korson.
Tufts confirmed that Korson will be part of a new medical team with other specialists, including a neurologist and gastroenterologist from Boston's Children's Hospital.
"Dr. Korson has agreed participate in the care of this patient, along with physicians at other hospitals," Tufts spokeswoman Julie Jette told ABCNews.com. "Other clinicians at Tufts Medical Center may be involved as well. They are working out details with the parties involved. We have nothing else to add at this time."
Justina was a seemingly healthy teenager performing jumps and spirals at a skating show, then six weeks later, on Feb. 10, 2013, she was in the emergency room at Children's Hospital in Boston after a severe bout with the flu, refusing to eat and barely able to walk, according to her family.
Under the care of Korson at Tufts Justina had a device surgically implanted because her bowel had essentially shut down. She was also on multiple medications.
A team of doctors at Boston Children's said her symptoms were psychosomatic, according to the family. The hospital then filed a complaint with the Massachusetts Department of Children and Families, as required by law, because they suspected the parents of child abuse for subjecting their daughter to invasive medical treatments and denying her mental health therapy.
They laid out a treatment plan for Justina, which her parents refused to sign, and on Feb. 14, 2013, when they attempted to check their daughter out of Boston Children's to take her back to Tufts to resume medical treatment, the family said they were told by Boston Children's that they could not discharge Justina.
Justina was diagnosed with somatoform pain disorder, a psychiatric condition when a person experiences physical pain for which no known medical explanation can be found, according to her family. The case highlights a growing concern among those with rare diseases and autoimmune disorders that physical symptoms that cannot be explained will be dismissed by doctors as psychosomatic.
Last week, Judge Joseph Johnston sent Justina to Shared Living Collaborative in Merrimac, a non-medical facility, but now, according to the family, Justina will stay in Framingham. "They couldn't handle all the media attention and wouldn't take her," said Pelletier of the Merrimac facility.
"We are exasperated and exhausted," he said. "These are false medical abuse charges against our family for supposed unnecessary surgery, going to some of the top doctors in the country, medically verified and insurance approved. I should be happy about the this latest victory, but I am not."