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.
"We didn't even get a chance to say goodbye," Pelletier said.
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.
Lou Pelletier said he and his wife have been only allowed to see their daughter on one-hour weekly supervised visits, first while she was in therapy at Boston Children's psychiatric ward Bader 5, then at a residential treatment center in Framingham, Mass. They say her condition has deteriorated because the hospital has stopped all medical treatment for mitochondrial disease.
The case has enraged advocates for children with mitochondrial disease.
"We feel deeply saddened for Justina and her family today," said Cristy Balcells, executive director of MitoAction. "This is an injustice to the rare disease patient community and to the dedicated and valiant physicians who do the right thing in caring for these patients. Mitochondrial disease is a very complicated illness with complex multi-system problems to treat so we are gravely concerned that Justina's medical needs are not being attended to, and we are concerned that her health will continue to decline without proper medical care."
The Pelletiers reached out to MitoAction for help last year, said Balcells, and they have been speaking on their behalf and providing support.
"We would have expected this to have been wrapped up in December," she told ABCNews.com. "We are truly dismayed that this continues to be prolonged. Justina has lost a year of her life living in an institution without people who care for her – no friends and family, nothing that a typical 15-year-old would have. It's been drawn out because of a political battle and it's not good for the child."
Mitochondrial disease affects the body's ability to make energy, according to Dr. Richard Boles, medical director of Courtagen Life Sciences, a genetic testing company in Massachusetts, and a practicing physician in Los Angeles.
"The symptoms can affect any part of the body," said Boles, who did not treat Justina. "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," he told ABCNews.com earlier this month. "Normal sensations are amplified by the nervous system. 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."
Dr. Mark Korson, chief of metabolism at Tufts, 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.
When ABCNews.com called Korson and Tufts Medical Center for comment, they declined, citing patient confidentiality.