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A juvenile court hearing Friday could decide the fate of a 15-year-old patient who's been at Boston Children's Hospital for almost a year because of a dispute about her medical care.
Justina Pelletier is in state custody after the hospital accused her parents of medical child abuse.
The Connecticut teen went to the Children's for treatment for mitochondrial disease, which is a rare disorder that affects how cells produce energy.
Although she had been treated for the disorder at Tufts Medical Center, Children's said she did not, in fact, have the disease.
Dr. Scott Pomeroy, who chairs the neurology department at Children's, says the hospital works hard to correctly identify the disorder, which is done with multiple diagnostic tools.
"Boston Children's is deeply concerned by the misinformation surrounding this particular case, but the hospital is unable to comment on specific patient care matters or any situation in which state child protective services is involved," he said.
A judge has issued a gag order, instructing those involved not to talk publicly about this case.
Cristy Balcells — executive director of Mito-Action, a Boston-based nonprofit supporting mitochondrial disease patients and their families — joined WBUR's Morning Edition to discuss the complex disease. Balcells is a registered nurse and the mother of a child with mitochondrial disease. She has also been in contact with the Pelletier family.
She says this is not the first time that children have been taken from their parents because of a dispute with doctors about how to treat the disease.
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