Wednesday, March 5, 2014

The Hell that Justina is going through

The following is an article by Mat Staver, the Founder and Chairman of Liberty Counsel, and representative of the Pelletier family. If you'd like to see the original article, you can visit www.TheBlaze.com (the link will take you directly to the article).  This helps describe the injustices that have been done to Justina and her family.


The story of 15-year-old Justina Pelletier captured the hearts of many Americans as the horrible story of the young girl’s plight over the past 13 months was brought to light by the media.

Following the advice Dr. Mark Korson, Justina’s treating physician at Tufts Medical Center, Lou and Linda Pelletier took their daughter to the ER at Boston Children’s Hospital. But there, a new doctor, seven months out of medical school, disagreed with her treating physicians and changed Justina’s diagnosis to a mental rather than a physical condition.

When the parents refused to sign a new treatment plan that would preclude them from seeking a second opinion, the hospital called in the Massachusetts Department of Children & Families (DCF) and prevented the parents from discharging their daughter and taking her back to Tufts Medical Center. For the past 13 months DCF has taken custody of Justina, making her a ward of the state and, thus, eligible for research by the Boston teaching hospital.

DCF also obtained a gag order preventing the parents from speaking to the media. Watching their daughter’s health decline and with no progress on the case, Lou spoke to the media. DCF then sought to hold the father in contempt of court. That is when Liberty Counsel came to the aid of Justina and her family.

Within four days after Liberty Counsel joined the case, DCF began to backpedal. Yesterday the court approved an agreement to (1) drop the contempt charges against Lou Pelletier for speaking to the media, (2) dissolve the gag order, and (3) transfer Justina’s medical care to Tufts Medical Center where Dr. Korson, a specialist, had been treating her for mitochondrial disease.

But DCF is still holding Justina as a ward of the state. This is the same DCF that has lost 134 children in the agency’s custody. The children of 134 parents are missing, and DCF has no idea where they are located.

As more of the details of this case come to light, people are becoming increasingly outraged. It is unfathomable that this barbaric overreach by a state agency is taking place in America – and in the city that launched the fight for American liberty, of all places.

As a Massachusetts ward of the state, Justina has been refused access to education. She is denied visitation by clergy, with no allowance for religious observances, including Easter and Christmas.

Her sisters have rarely been able to see her, and her 92-year-old grandparents have not seen her for 13 months. Justina’s parents were only allowed weekly visits for one hour – and that under extreme supervision, including a Massachusetts State Trooper. DCF prevented the parents from even having a cell phone to photograph their daughter.

Under Massachusetts law, prison inmates get up to five visits per week, medical care, and education rights. DCF has granted Justina one visit per week, little medical care, and no education, even though she is just 15 years of age.

Justina Pelletier has been treated far worse than an incarcerated felon by the state of Massachusetts!
Plus, unknown to many people, Boston Children’s Hospital is a chartered teaching hospital and is allowed to conduct medical research and experimentation on children who are declared wards of the state. According to Boston’s Children Hospital’s “Clinical and Investigation Policy and Procedure Manual“: “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 abuse as a DCF ward is unfathomable. No 15-year-old should be forced to live under such conditions!

In January 2013, before she was admitted to the Emergency Room at Boston’s Children Hospital, Justina was involved in ice-skating competitions and was in a private school under an Individualized Education Plan (IEP) that was sensitive to her learning disability.

As a ward, Justina’s deficient medical care has left her extremely weak and confined to a wheelchair. Being refused education, she is now two years behind her classmates.

After learning of the Pelletier’s plight and performing our own background investigation of the case, I flew to Boston to represent the family in court against the contempt charges directed at Lou Pelletier for allegedly breaking a court-ordered gag order.
The media scrutiny and legal proceedings have caused DCF to reconsider their course of action and begin to back away from the abusively hard-core stance it has taken on this matter. But make no mistake, DCF must be held accountable!

More than a dozen Massachusetts state legislators blasted the Department of Children and Families for “breaking up” the Pelletier family and decried the ill-advised imprisonment of Justina Pelletier. They are now calling for the House Committee on Post Audit and Oversight to launch a full-scale investigation into DCF’s handling of the case.

The idea of a medical facility removing a child from a loving family – a family in which there is no history or evidence of abuse of any kind – is a chilling thought.

This poor girl and her family have been through hell. DCF should be held accountable for this flagrant violation of its authority and abuse of government power.

Tuesday, March 4, 2014

Free Justina

I was just telling someone about my blog and sending them a link when I realized that it's been over a month since I posted.  Then I realized something else... I have not posted on my blog about something that I have been very passionate about for the last 3 months that I NEED to share with everyone.  I am so mad at myself for not doing so earlier. I guess I just need to get back into the habit of posting on my blog every couple of weeks again.

For the last few months I have been very involved (as much as I can) in supporting a family who has been going through hell for over a year.  Justina Pelletier has been held hostage and tortured for the last 387 days.

It's a bit of a long story, but here's the cliff's notes...

Lou, Linda, and Justina Pelletier
Justina Pelletier is a 15 year old girl from Connecticut who was diagnosed with Mitochondrial Disease about a year and a half ago by a highly respected physician, Dr. Mark Korson, who specializes in mito and other metabolic diseases at Tufts Medical Center. Justina's sister was diagnosed before she was. In Feb. 2013, Justina's parents, Lou and Linda, took her to Boston Children's Hospital (BCH) because she was not handling a bout of influenza well, as is the case many times with Mitochondrial Disease patients.  The doctors at BCH disagreed with the diagnosis and instead believed that Justina has a psychiatric illness called Somatoform disorder.  They decided to take her off of all medications she'd been prescribed and only treat her psychologically.  Two of those medicines were for dysautonomia (elevated heart rate, low blood pressure, dizziness, syncope, etc.) and one was for the pain caused by mito.  When Justina's parents chose to take her elsewhere for a second opinion, DCF was called and ended up taking custody of Justina. Since then, she has been held at Boston Children's Hospital in the psych unit for 12 months, followed by almost 2 months at a step-down psych facility, where she sits today.  This psych facility does not provide medical care.  They will not even take patients with medical problems.  However, they admitted Justina to their facility.

For the last year, Justina has not had any medical care (not counting psychiatric), education, or access to friends or hobbies.  She has only been permitted to see her parents for 1 hour and talk to them on the phone for 20 minutes each week.  In December of 2012, shortly before her admission in Feb. '13, Justina was ice skating.  She is now completely wheelchair bound.

In addition to being taken off of her medications, not receiving an education, and being permitted to see her family for just one hour a week, Justina has been "tortured" in many other ways.  One of the primary problems Justina has is GI dysmotility.  That was the reason for 4 of the 5 procedures/surgeries she's had that the doctors at BCH thought were excessive, despite being ordered by the doctors at Tuft's medical center. While in Boston Children's Hospital, Justina was made to sit on the toilet for 2+ hours at a time to get her to go to the bathroom because they think it's all psychological.  The people "caring" for her have not flushed her G tube, which is necessary daily. Want to hear more about the abuse and torture she's received?  Watch Justina's dad, Lou Pelletier discuss it HERE.  (If you don't like Glenn Beck, get over it because he's the first national reporter willing to interview Lou.  This isn't about politics.  It's about Justina.)

The Pelletiers have now been to court too many times to count.  For a long time they were fighting this battle on their own.  Then the mito community and a few other concerned parents got involved.  With the mito community being as small as it is (it is a rare disease after all), we weren't getting very far.  That's not for a lack of trying, though.

Many months ago the judge overseeing the case placed a gag order on the Pelletiers, DCF and BCH.  Because of that gag order, Lou and Linda have been unable to talk to the media about the case.  After Justina had been out of their care for over a year, he finally decided to break the gag order and suffer whatever consequences came with doing so.  Lou was ready to do whatever he needed to to get his daughter back, before it's too late.  That is why you can see interviews with Lou all over the place now.

Because of the national coverage Free Justina now has thousands of supporters.  Everyone is pitching in to help.  I believe that the public outrage over this case has made a difference.

As I mentioned above, Justina is currently at a step-down psych facility near Boston, MA, an hour and a half from the Pelletier's home in CT.  At the Feb. 24th hearing, the judge ordered Justina to be transferred to a foster care facility in Merrimac, MA., 2 hours from the Pelletier's home.  Luckily, due to the pressure of the public, that didn't happen.  Justina is still at the psych facility.  While we don't want her there, we really don't want her in foster care.

The most recent news is that 2 Massachusetts reps have created a resolution to release Justina.  A total of 16 reps are backing the resolution as of right now.  The next informal Mass. House of Representatives session is Wednesday, March 5th.  The next court hearing is scheduled for March 17th.  So now we wait.

At age 30 I was diagnosed with Mitochondrial Disease. Prior to getting sick I was an ER nurse and an avid runner.  I know what this disease does to a person. Living with an illness like this is very difficult and very isolating.  I cannot imagine having to go through this without my husband and kids. Justina is a 15 year old child who is going through it without her family to comfort her and help her through it. As the mother of 2 girls, 15 and 7 years old, I also can't imagine losing custody of one of my children for over a year just for trying to get her the best medical care possible.  

Parents and patients should not be punished for requesting to seek a second opinion.  We should not be punished for being very involved in our child's care and worrying that a specific doctor or medical facility is wrong.  Doctors are human and make mistakes too. How is it that in America parents are not allowed to seek a 2nd medical opinion without repercussions???  Are we not allowed to choose which grocery store we want to go to or which massage therapist to see?  Then why is it a crime to request a different doctor or medical facility?

Want more information?

You can read a more detailed version of the story on the Boston Globe's website here.

Many people are saying, “There has to be more to the story that we’re not hearing.”
- There is NOT more to this story or "another side." Many experts and reporters have dug into this story with the same questions and found this horrific nightmare to be TRUE. The Pelletier's are a good family who are desperately fighting for their child to be back home...before it is too late.

Want information about Justina as it happens?
- For up to date information as the story unfolds, like Beau Berman's facebook page, reporter with FoxCT. He was the first reporter to release the story to the public and keeps up withe everything that happens.
Here’s a link to that page -https://www.facebook.com/BeauBermanFOXCT

Want to see all 19 reports by FoxCT about Justina Pelletier since Nov. 18th?
- Visit - www.foxct.com

Want to know how you can help?

- THE MOST IMPORTANT WAY YOU CAN HELP - The Pelletier's have been financially drained fighting this for over a year now. PLEASE DONATE at www.freejustina.com Anything you can donate will help! Even if it's just $5!! Thank you!!

-Keep hashtagging #‎FREEJUSTINA all over social media (facebook, twitter, etc.)!! Add links to articles about Justina. We need to keep this fire burning! Please don't let it burn out!!
SHARE! SHARE! SHARE! SHARE! Spread the word!!!

-Join the Facebook page "Free Justina Pelletier from Boston Children's Hospital" at  www.facebook.com/groups/freejustina/.  This is where you will find all the chatter surrounding this case.

- There is a phone call campaign to notify all people involved, no matter how much or how little. Visit www.callsforjustina.com to find an updated list of who to call to help free Justina.

- Please sign the Whitehouse petition at Whitehouse.gov
For those of you worried about the government having your name, email, & city...you think they don't already have that info? Please help! We have a long way to go still! Share it all over!

- You can also sign the petition at The Petition Site


If you have any questions, don't hesitate to comment here and I'll do my best to answer them.  Don't forget, no anonymous comments.  Sorry!

Thank you, as always, for reading.  And, most of all, thank you for taking the time to do one or more of the things listed above to help get Justina home.