June 18, 2014— -- Justina Pelletier can head home to West Hartford, Conn., after a 16-month tug-of-war between her parents, Massachusetts state officials and doctors, a juvenile court judge has ruled.
"I am ecstatic,” the 16-year-old’s father, Lou Pelletier, told ABC News today. “I was food shopping and heading back to my office and my wife’s phone number showed up on the cell phone. It was Justina. She said, ‘Daddy, daddy, I am coming home.’”
Since February 2013, Linda and Lou Pelletier have waged an angry and highly publicized custody battle for their daughter, who was under state-ordered care for what was deemed a psychosomatic illness. The Pelletiers claim that top doctors at Tuft Medical Center diagnosed Justina with mitochondrial disease, which causes the body’s cells to power down. They say she is paralyzed from the waist down.
The Massachusetts Department of Children and Families sided with doctors who thought Justina’s illness was psychological. They claimed the Pelletiers were hindering their daughter's healing and accused them of medical child abuse.
The latest court ruling came down Tuesday, two days after Justina visited home for the first time Father’s Day. The teen, who uses a wheelchair, had to be carried into the house, Lou Pelletier said, adding that the family went to a performance of Circle de Soleil and had a barbecue.
Lou Pelletier insists that Justina was able to walk on her own before beginning treatment at Boston Children’s Hospital, and said her health has deteriorated during the custody battle.
In May, Justina was moved to the JRI Susan Wayne Center for Excellence in Thompson, Conn., and treated under a “structured visitation plan” intended to eventually reunite her with her family, according to the Massachusetts Department of Health and Human Services. There, she was to receive individual therapy, family therapy, medical care, recreational activity, occupational therapy and physical therapy.
Suffolk County juvenile court Judge Joseph Johnston said the Pelletiers have been “cooperative and engaged in services” since their daughter’s placement at JRI.
“Family members have visited Justina daily. Visits progressed well and were increased to extended, unmonitored visits off the JRI campus,” Johnston wrote in Tuesday’s ruling. “Justina returned to school full-time and is engaged and excited to be in the classroom.”
The court had previously sided with Boston Children's Hospital, which was treating the teen for a psychiatric condition that causes a person to experience physical pain for which no known medical explanation can be found.
In March, Johnston gave the state of Massachusetts permanent custody of Justina until the age of 18 in a ruling that chastised her parents and accused them of mismanaging their daughter’s treatment. The four-page decision slammed the family for verbally abusing hospital caregivers by calling them "Nazis" and accusing them of "kidnapping" and "killing" their daughter, according to a copy obtained by ABC News.
The court has since ordered a new plan to have Justina's former doctor, Mark Korson of Tufts Medical Center, treat her for "persistent and severe somatic symptom disorder," a condition that acknowledges psychiatric as well as physical illness.
Tufts Medical Center spokeswoman Julie Jette confirmed that Justina was receiving care under Korson, but said “beyond that, we are not discussing her case.”
Lou Pelletier said Boston Children’s Hospital is no longer treating Justina, though some of its experts will consult with the Tufts team.
Officials at Boston Children’s Hospital have continued to not comment on the case.
DCF authorities have also declined to comment, citing confidentiality reasons.
Lou Pelletier said the family would “stick for now with” Tufts doctors, but would also “keep our options open.” He said his top priority since the ruling is to get Justina in physical therapy, which he claims she never received at JRI.
“She hasn’t had that and at some point, we need to do a full reevaluation medically,” he said. “We need to find out what the damage is that has been done to her. She has been like a prisoner of war for 16 months.”
When asked about taking legal action, Lou Pelletier said the family was still “catching our breath.”
“But at some point the people who were part of the abuse and torture of our daughter need to be held accountable,” he said. “Not just for Justina, but for all people who are put through this.”
Patient advocates were vocal on the judge's final ruling.
“This case not only has taken its toll on the Pelletier family but also has had a significant impact on the mitochondrial disease and rare disease community,” said Christine S. Cox, director of outreach and advocacy for MitoAction, a group that educates and advocates for patients with the disease.