Justina Pelleiter is a 15-year-old girl who has been in Boston Children’s Hospital for over a year. She was referred there by her physician at Tufts Medical Center where she was taken by ambulance to BCH after she had contracted the flu. She had formally been diagnosed with mitochondrial disorder, which her older sister also has and is known to be heredity.
Mitochondrial disorder is a group of disorders caused by dysfunctional mitochondria, the organelles that generate energy for the cell. Mitochondria are found in every cell of the human body except red blood cells and convert the energy of food molecules into the ATP that powers most cell functions.
The symptoms include poor growth, loss of muscle coordination, muscle weakness, visual problems, hearing problems, learning disabilities, heart disease, liver disease, kidney disease, gastrointestinal disorders, respiratory disorders, neurological problems, autonomic dysfunction and dementia.
Upon arriving at Boston Children’s Hospital the neurologist who met them said, “he didn’t believe in mitochondrial disorder”. At first the family was open to “to try a new approach.” But when the hospital laid out their plan to take Justina off all of her mitochondrial and pain medication’s, her parents became concerned and wanted to put her back at Tufts.
The doctor at Children’s Hospital diagnosed her 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 nightmare begins
A few days later she was transported to the psychiatric ward at Children’s Hospital.
Currently the parents are only allowed a 20 minute phone call on Tuesday and a one hour visit on Friday. They were also issued a gag order? WHAT?
Where do we live?
I can’t even imagine what these parents are going through.
Is this really what we have come to, where parents can’t be with their children in a hospital?
Where security guards are called in and the Massachusetts Department of Children and Families take control of their child? Haven’t we had enough of these tragic situations with Jahi McMath and Marlese Munoz?
I had not heard of this case but now hopefully as the situation comes to light more parents will be outraged.
I am OUTRAGED!!!
This young 15-year-old child was skating a week before contacting the flu and is now in a wheel chair.
Pray for the family as her condition has worsened since all the vitamins and medications have been removed that were treating her for mitochondrial disorder.
You know I am a strong advocate for parents knowing best.
***If you want to donate there is a PayPal account set up for her here.***
There is also a Facebook page, free Justina where you can go for updates.