DC - Justina gets standing ovation from Congress

[txsvicki]

I hope no one is thinking of removing her colon. That was mentioned early as being thought about before Justina had the flush installed.

 

[annahanna]

Right. That reminds me: did anyone following the twists and turns of this case ever find out if the Miracle site is registered as a charity with the State of Connecticut? I recall some inconclusive discussion of that. The site says it is "non-profit" but does not address whether it is registered, which I believe affects whether you can claim a contribution for tax purposes...although IMO, most of the site's devoted patrons probably don't care about that.

According to the CT Department of Consumer Protection: "The Connecticut Solicitation of Charitable Funds Act requires most organizations that solicit money for charitable purposes to register or claim an exemption from registration with the Department of Consumer Protection. All paid solicitors and some fundraising counsel must register, post a bond and file certain reports." This would be true even if the charity does not file the necessary federal paperwork to become a non profit. This is the way to incorporate a charity in CT, so it would have to be done BEFORE filing for non-profit status with the IRS. I searched active, inactive, and pending licenses for charities on the related CT.gov eLicensing website. I found no record of charities by any of the following names: Miracle for Justina, Justice for Justina, Free Justina, Justina Pelletier, or Pelletier family. I also searched the words individually. I did find charities in CT that contained the words, Freedom, Justice, and Miracle in their names, but they do not be related to this cause. They do not now, nor do they ever appear to have been registered as a charity with the state of CT.

http://ct.gov/dcp/cwp/view.asp?a=1654&q=459952
https://www.elicense.ct.gov/Lookup/LicenseLookup.aspx

 

[annahanna]

I hope no one is thinking of removing her colon. That was mentioned early as being thought about before Justina had the flush installed.

I hope not. That would be a very drastic step.

 

[Hiandmighty]

I was just coming to post about how there has been no test results published....

 

[sweetmom]

Another day; another failure to reveal whatever the tests reportedly done on Justina actually show. Hard to believe an outstanding hospital like Yale-New Haven is that incompetent. But posters on the Miracle for Justina site are getting cranky about being deprived of the testing news. One low-info poster complains that the info should be available, because Justina has been there for a few days already. Um, no. She has been there for a month, since Sept. 29, following a short stay the week before. If this keeps up, IMO, she'll be at Yale-NH as long as she was at BCH. Well, at least no one is throwing around that incendiary term, "kidnapped." Not yet, anyway.

 

[Hiandmighty]

There is an update: no good news, more tests. They shame BCH for "what they did" to Justina. (Can hospitals sue people?)

 

[i.b.nora]

So, they did not get good news today, but they don't say what the actual news was. Hospital is going to run more tests to determine the next step.

Blame is directed specifically at BCH and unnamed others for hurting her sister.

Odd.

 

[Hiandmighty]

Was she not healthy and walking when she was released from BCH?

 

[i.b.nora]

If I am not mistaken, she was delivered to BCH in a wheelchair and she has been confined to one ever since.

 

[sweetmom]

So, they did not get good news today, but they don't say what the actual news was. Hospital is going to run more tests to determine the next step.

Blame is directed specifically at BCH and unnamed others for hurting her sister.

Odd.

The family will NEVER admit it, but Justina was in better shape when she left BCH and the 2 step-down facilities than she was when they brought her to BCH and than she is now, after 2.5 months at home. Going in, she could not walk, was incoherent and near choking. When she left the facilities, she was smiling, talking, testifying in Washington, playing in her family's pool (their own video shows she did not look at all paralyzed) and appeared to have improved considerably. Now she's been back in the hospital for a month with G
I issues (which she had before BCH) and no diagnosis (or at least none the family will share). But you should read the hysterical, belligerent, misinformed posts on the Miracle website blaming BCH and calling for attacks on the doctors, judge, DCR, etc. Appalling stuff, and the Pelletiers are not asking their blindly loyal supporters to tone it down. Some of the posts are truly frightening.

 

[annahanna]

So, they did not get good news today, but they don't say what the actual news was. Hospital is going to run more tests to determine the next step.

Blame is directed specifically at BCH and unnamed others for hurting her sister.

Odd.

This situation is just sad. I can not figure out what the family is expecting out of all of these extended hospitalizations. As parents who have reportedly dealt with extensive medical situations and extreme amounts of testing and diagnostics, they (should) know by now that a battery of testing rarely results in the epiphany of diagnosis and magical cure that they seemed to be leading their Facebook supporters to expect. I don't know what is wrong with Justina or what these tests supposedly revealed, but I also can not fathom what would keep her in the hospital for upwards of a month for diagnostics and pain management. Generally, a patient would be stabilized, given prescriptions for symptom management, and then discharged home for outpatient testing. Keeping her in the hospital this long only makes sense if her condition is unstable or highly variable or if the hospital feels the need to keep a close eye on patient family interaction or patient care. There has been no indication in the Facebook posts that Justina is unstable, just that she is in a lot of pain. I hope for Justina's sake, that we are not going to be hearing about another "kidnapping" in the near future. This is of course, only my opinion. I wish for only the best for this young lady.

 

[sweetmom]

IMO, they are looking for confirmation that she has mito, that BCH did her irreparable harm by not continuing the weird and contradictory mix of medications she was on when she was admitted there, and that BCH did some kind of double-secret research using Justina as a guinea pig. I also do not believe that ANY of that is true, but of course, any or all of it would support the family's fairy tales.

So the remark on the Miracle for J site about not getting good news may just mean that Yale-NH has ruled out mito (and the rest of the anti-BCH nonsense.) That, IMO, would not be good news for the family, but it might well be good news for poor Justina, if it leads to treatment that would actually help her.

But like other posters, I cannot imagine why she has been in the hospital for a month, considering how quickly hospitals send patients home these days, after such events as childbirth, heart attacks, etc. Could it possibly be that they want to keep her away from the family? Could they even do that? Are we back on that merry-go-round? This really is like a bad TV movie of the week.

 

[Hiandmighty]

I also wonder if they are keeping an eye on the family, and keeping her away from them to see if she improves.

I also suspect she tested negative for mito.

:cow: of course, :moo:

 

[i.b.nora]

Unfortunately, I believe at least one member of the family is visiting her everyday. Whereas, before, during the many months when she obviously improved, the family visits were limited and monitored.

Also, she was never tested before by the Tufts people for the 'mito', it was apparently assumed that since her older sister had been diagonosed with it, that she must have it too.

I think they need to test for the presence of antifreeze (or similar). Whatever it is, Jennifer said they were told (by Yale) that her condition is irreversible. If they don't know what it is, how would they know if its irreversible?

 

[Hiandmighty]

IMO, the family really needs to get ahold of the comments going on on the FB page. One even said someone should find the BCH doctor and make him disappear.

Very very scary comments section..,

 

[sweetmom]

IMO, the family really needs to get ahold of the comments going on on the FB page. One even said someone should find the BCH doctor and make him disappear.

Very very scary comments section..,

Exactly right. The comments swing from hysterical religious rants to downright scary threats about taking up arms and killing doctors and DCF and legal system people, which just should not be allowed. Instead, they are encouraging these terrible posts by allowing them to stay up.
The family has slandered the hospital and others, caused the dangerous hacking of the BCH parents' message board by promulgating their unproven accusations about the hospital and, IMO, may have discouraged parents of sick children from getting the care they needed by demonizing BCH and other hospitals. And from what I have read, "Justina's Law" has no basis in fact and will actually keep some kids who are wards of the state from getting legitimate medical help.

If they want to keep Justina out of BCH, fine. But their actions have spread and are impinging on the lives of others. A very very unhealthy situation, IMO.

 

[Gardenlady]

The comments have been over the top and downright threatening at times all throughout this situation. I have zero hope of them doig anything to rein in the hysteria.

I also think Justina needs a work up for poisons, btw.


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[liljim]

the only hope i have left in this case is that a full and thorough investigation is done and a report released.

and although it would clog up the courts i also hope a lawsuit is filed simply for the reason that it would force many documents and information to become public.

i still have no idea what is wrong with this girl physically or mentally, all i know is there have been wild allegations thrown around that had a big impact on many lives and institutions.

 

[sweetmom]

I'm for a lawsuit too, but the one I want is BCH suing the family for defamation, slander and willful stupidity. Not sure those are legal grounds, but boy, that would be one heckuva trial.

 

[Tugela]

Her parents could make up some diagnosis and the hospital wouldn't be able to correct it, is that right?

They wouldn't be able to discuss her diagnosis, but they could probably say something along the lines of "claims being made by the parents regarding diagnosis ascribed to the hospital are incorrect and misleading" and leave it at that. Justina's privacy might be protected, but the parents have no such protection.