Justina Pelletier’s story is one that has been swept under the rug by most mainstream media outlets. It’s actually shocking that something like this could happen in the United States. Pelletier is like any normal young teenage girl until the state of Massachusetts ripped her apart from her family.
Update : Read here for updates to the Justina Pelletier story.
Who Is Justina Pelletier and Why Should You Care?
As a young teenager, Justina was diagnosed with a mitochondrial disease. Mitochondrial disease is a group of diseases that have an affect on our cell’s mitochondria. It’s a component of our cells responsible for providing energy.
After her diagnosis of her disease in 2011, Justina was able to live a relatively normal life. Her treatment consisted of a team of doctors at Tufts Medical Center in Massachusetts. That all changed in February of 2013. That month Justina came down with the flu. Because of the nature of mitochondrial disease people with the disease can decompensate faster than others. Her parents acted quickly and took her to Tufts Medical Center. The doctors at Tuft recommended she go to Boston Children’s Hospital to see her GI specialist who had relocated there.
At Boston Children’s Hospital this is when everything began to change. Justina was used to having her regular doctors follow her case. This time, a new team of doctors took over Pelletier’s case. In addition to the medical team there psychologists were also consulted. Her old doctors were shut out of the case and the new ones began questioning her mitochondrial disease diagnosis. The staff at Boston Children’s Hospital determined that there were too many “red flags” in her case and consulted the Department of Children and Families for an investigation. The very next day the parents were told to show up in court. At the hospital they were met by staff security and were escorted off the premises.
From Mitochondria To Somatoform
The new medical team re-diagnosed her with somatoform disorder. This disorder in short, is a mental disorder that has symptoms that resemble an actual illness but lacks any way to explain the symptoms. It’s a form of mental disorder. The new medical team thought the disease was psychiatric in nature and was just an element in her mind. Her parents, Lou and Linda Pelletier didn’t like the way the direction the new medical team was taking. In fact, they refused to sign off on the new diagnosis – and still have refused to at the current time. Refusing to accept their daughter’s re-diagnosis brought on a whole new set of problems the family never would have imagined.
All of this happened within twelve hours. All of this happened from a psychiatric team that refused to consult physicians from Tufts who were following her case constantly for more than two years. Her parent’s have their suspicions of why all of this happened so quickly. Because mitochondrial disorder isn’t exactly the most understood disease, Medical research is the first thing that comes to their mind. Here’s a portion of what Boston Children’s Hospital Clinical Investigations Policy states:
“Children who are wards of the state may be included in research that presents minimal risk or greater than minimal risk with a prospect of direct benefit.”
Justina’s Illness Takes A Turn For The Worse
Justina’s parents aren’t the only ones going through pain. Justina ended up being locked in a psychiatric unit and her new doctors started refusing her medical treatment to manage her mitochondrial disease. Her pain increased. Her symptoms worsened. She went from a teenager who loved ice skating to a wheelchair bound girl who is now paralyzed from the hips down. Meanwhile, according to the family, psychologists would spend hours interrogating her and telling her that this disease was in her head and that nothing was wrong with her.
As it stands at this time, Pelletier’s parents are only allowed to see her parents
once a week – for only an hour and only under direct supervision. In the meantime, the parents were urging the hospital to allow them to allow there daughter to be home for Christmas. That dream was shattered when the courts ruled that the hospital should remain in custody of the parents.
Since then, the Pelletiers have appealed to the state to regain custody. Currently, the decision has been postponed two times. Justina is currently being held at a “temporary treatment facility” at Wayside Youth and Family Support Network in Framingham, Massachusetts. While she has been in the state’s custody her health has decreased drastically. When the treatment for her mitochondrial disease stopped her health decreased drastically. She is now wheelchair bound.
How You Can Help Justina Pelletier
As for how the courts have been treating her parents this whole entire time – the courts have the parents under a gag order. The order is not just limited to the parents but also the caregivers and doctors as well. The ongoing court battle has exhausted the family’s funds. Even things such as food is hard for them to afford now. With nowhere left to turn the family was finally forced to break their silence. On Monday February 17th the father appeared on television and radio pleading his case – desperately looking for anyone who would be able to help him. The next day the courts charged the father in contempt for breaking his silence. Fast forward to February 24th, 2014, a court ordered that Justina Pelletier be placed in foster care.
The parents are in dire need of help of a medical institution that has gone horribly wrong. It’s also not just the parents that need help it’s Justina herself. Justina needs her family. She needs her treatment of her original diagnosis. Her parent’s, fear for the safety of her life. To keep up with the family’s ongoing battle you can follow A Miracle For Justina via Facebook. The family has also set up a donation page to help them with their struggles at Free Justina.
March 3rd Justina Pelletier Update
After media pressure the Department of Children and Families is attempting to distance itself from a story that has caught fire. After the media recently picked up the story it caught the attention of at least twelve legislators in Washington D.C. calling for the DCF to release Justina Pelletier back to her family. The DCF is now considering a plan to transfer care back to Tufts Medical Center to resume her original treatment. Currently, the plan is pending her next court meeting which is scheduled for March 17th. Let’s hope for the best.
1. “Home For Christmas – Latest On Teenager Kidnapped By Boston Children’s Hospital.” Glenn Beck. Mercury Radio Arts. 9 Dec. 2013. Web. 22 Feb. 2014.
2. “Justina Pelletier: Shocking Boston Children’s Hospital Policy Revealed.” Inquisitr. 20 Feb. 2014. Web. 22 Feb. 2014.
3. “One Of The Best Hospitals In The Country Is Accused Of Doing One Of The Worst Things Imaginable To Families…Again.” The Blaze. Mercury Radio Arts. 16 Dec. 2013. Web. 22 Feb. 2014.
4. “Watch: Father Of The 15-Year-Old Being Held At Boston Children’s Hospital SPeaks Out For The First Time.” Glenn Beck. Mercury Radio Arts. 17 Feb. 2014. Web. 22 Feb. 2014.
5. “First, Do No Harm: How We Failed Justina Pelletier And Her Family.” Huffington Post. AOL Tech. 23 Feb. 2014. Web. 24 Feb. 2014.
6. “Report: Judge Rules To Put Justina Pelletier In Foster Care.” The Blaze. Mercury Radio Arts. 24 Feb. 2014. Web. 24 Feb. 2014.