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.

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