Family battling Children’s Hospital to bring teen home for Christmas #2

[txsvicki]

Nerve damage and neuropathy can cause bad pain. She's complained of pain. True paralysis would have to come from spinal nerves or motor neurons in the brain, imo. My husband has spinal damage and most muscles in one leg do not work, but he has partial feeling and use of some upper leg and buttock muscle and can walk. It doesn't cause weakness, it's paralysis. I wonder if her bladder is working. We'll never know that probably.

 

[octobermoon]

Nerve damage and neuropathy can cause bad pain. She's complained of pain. True paralysis would have to come from spinal nerves or motor neurons in the brain, imo. My husband has spinal damage and most muscles in one leg do not work, but he has partial feeling and use of some upper leg and buttock muscle and can walk. It doesn't cause weakness, it's paralysis. I wonder if her bladder is working. We'll never know that probably.

No we won't know, and really we shouldn't know most of what we do about her medical condition. But it is curious what the family leaves out. imo.

Her legs look healthy, no atrophy that I can see from being chair bound/immobile for over a year. I am not a doctor and don't pretend to be one here. But you are right bladder control would be an issue (usually).

I wasn't surprised that her mom is predicting new hospitals and a new doctor. Justina looked a little perplexed. She look taken aback at that. moo

 

[Morag]

No we won't know, and really we shouldn't know most of what we do about her medical condition. But it is curious what the family leaves out. imo.

Her legs look healthy, no atrophy that I can see from being chair bound/immobile for over a year. I am not a doctor and don't pretend to be one here. But you are right bladder control would be an issue (usually).

I wasn't surprised that her mom is predicting new hospitals and a new doctor. Justina looked a little perplexed. She look taken aback at that. moo

BBM
She was probably sorry to hear she was so sick. On the day she went home she said she would be running and skating again soon. She certainly looks well.

 

[octobermoon]

BBM
She was probably sorry to hear she was so sick. On the day she went home she said she would be running and skating again soon. She certainly looks well.

It looked to me that she was confused/sad/perplexed at the thought of new hospitals and doctors. I can't blame her. She was engaging, smiling, and happy until that point I thought. Maybe I am reading too much into it?

 

[octobermoon]

BBM
She was probably sorry to hear she was so sick. On the day she went home she said she would be running and skating again soon. She certainly looks well.

Honest to goodness to me it looks like her parents enjoy the attention they receive from her medical issues. The loss of a doctor, need for new hospitals etc. Who plans new hospitals???? Doctor shoppers imo. :facepalm:

Her mother in need of attention
http://a.abcnews.com/images/Health/GTY_mother_collapsed_mar_140225_16x9_992.jpg

 

[jaunty-girl]

Honest to goodness to me it looks like her parents enjoy the attention they receive from her medical issues. The loss of a doctor, need for new hospitals etc. Who plans new hospitals???? Doctor shoppers imo. :facepalm:

Her mother in need of attention
http://a.abcnews.com/images/Health/GTY_mother_collapsed_mar_140225_16x9_992.jpg

Wouldn't it be great if they just doctor shopped for themselves? I thought Justina looked perplexed too. I mean she's been hearing for months that BCH was the problem and they just needed to get her home. She's probably been thinking that once she got home, she would be quick to mend. Now she's hearing that she's in for more doctors and probably procedures.

 

[Linda7NJ]

Wouldn't it be great if they just doctor shopped for themselves? I thought Justina looked perplexed too. I mean she's been hearing for months that BCH was the problem and they just needed to get her home. She's probably been thinking that once she got home, she would be quick to mend. Now she's hearing that she's in for more doctors and probably procedures.

The look on her face said it all. IMO


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[Morag]

It's hard to believe that any doctors will treat her without having their eyes wide open.

 

[sweetmom]

It's hard to believe that any doctors will treat her without having their eyes wide open.

It's just awful to realize that they NEED Justina to remain sick in order to keep attention and the website and all the related fundraising going.
If they were to happily announce that she is much better now....which certainly appears to be the case, as she's eating, not slurring her words and is much more energetic, and even her walking difficulties are the same as before she went to BCH, not worse...then that would be tantamount to admitting that BCH helped her.
But they would never admit to that, even if it is true, and IMO, it is true.

Their "story," their "narrative," is that Justina is desperately sick and BCH harmed her. They are not going to give up on that, no matter what the facts really are, IMO.

And all that BS about her being the victim of mad-scientist experiments is just appalling.

 

[sweetmom]

Props for "florid religiosity!

Thanks, Morag!
I've been told that I have a way with words

And a Happy Fourth of July to you and all the Websleuthers.

 

[annahanna]

According to the Connecticut Department of Consumer Protection, most organizations that solicit funds for
charitable purposes must register or claim exemption from registration with the DCP. IRS code 501(c)(3) registration is not required to solicit funds, but is required for those donations to be tax exempt/deductible.

I checked on the state of CT's elicense site under charities <modsnip> https://www.elicense.ct.gov/Lookup/LicenseLookup.aspx
<modsnip>

http://www.ct.gov/dcp/cwp/view.asp?a=1654&q=467354
"An organization that wishes to solicit charitable funds in Connecticut is not required to be a 501(c)(3) or incorporated as a non-stock corporation prior to registration with Public Charities. Charities MUST register with Public Charities BEFORE any type of solicitation in Connecticut. They do not have to wait until they are a 501(c)(3) charity. Some charities need to start soliciting in order to raise funds to pay the IRS application fee and any other costs associated with becoming a 501(c)(3) IRS-recognized charity. If a charity does solicit before obtaining this status, the charity should not misrepresent its tax-deductible status. More information regarding tax exempt status can be obtained by calling the IRS at 1-877-829-5500."

There were 4 registered charities in CT with the word miracle i<modsnip>.
https://www.elicense.ct.gov/Lookup/LicenseLookup.aspx
Miracle Flight for Kids
Miracle House Inc.
Miraclefeet
Miracles of Mitch Foundation

 

[annahanna]

For as loudly as the Pelletiers screamed and yelled about getting Justina back to her doctors at Tufts, and as much hype as the Liberty Counsel had going on before the parents's meeting with the doctors and DCF, very little was said after the meeting. Essentially, they just said "the meeting went very well." Considering they usually can't keep themselves from providing detail, the lack of detail was very notable. There were no references to the "expert Dr Korson", "wonderful Dr Flores" or even the "evil Boston Children's Hospital." There was no mention of "finally Justina has her Mito diagnosis back!" I suspected at the time that the new medical team required the parents to sign a code of conduct/confidentially agreement. Watching Linda Pelletier casually mention "we may be losing our GI doctor" without the usual accusations against BCH or playing some other form of the blame game made me even more certain of it. If the parents are gearing up for a new round of doctor and hospital shopping (poor kid) I have to wonder if the Tufts team is giving them answers that they do not want to hear. Perhaps they are being told that The Tufts team also believes that Justina has a Somatoform Disorder? Perhaps the other members of the Tufts team are disagreeing with Korson's working diagnosis of Mito? Perhaps they are telling the parents that it is time to remove Justina's cecostomy tube? I am sure we will never know the answers to those questions. I just hope that when these parents start doctor shopping again, Justina is able to reach back to what she learned in individual and group therapy and advocate for herself. I pray that she received enough help to develop the strength of will, the maturity, and the self-confidence to communicate her true symptoms to her doctors and begin to handle her medical appointments without the input of her parents or other family members. If I know anything about BCH, I know that they would have tried to prepare her to take over responsibility for her medical care.

 

[jjenny]

It's just awful to realize that they NEED Justina to remain sick in order to keep attention and the website and all the related fundraising going.
If they were to happily announce that she is much better now....which certainly appears to be the case, as she's eating, not slurring her words and is much more energetic, and even her walking difficulties are the same as before she went to BCH, not worse...then that would be tantamount to admitting that BCH helped her.
But they would never admit to that, even if it is true, and IMO, it is true.

Their "story," their "narrative," is that Justina is desperately sick and BCH harmed her. They are not going to give up on that, no matter what the facts really are, IMO.

And all that BS about her being the victim of mad-scientist experiments is just appalling.

Walking difficulties? She can't walk at all.
What can she possibly do that can be described as energetic?
Her words slurring seems to come and go, so you can't possibly claim she isn't slurring her words.
Again, just six weeks prior to going to BCH, she was ice skating.
And regarding BCH "helping" her, BCH hasn't been treating her for quite a while now.

 

[Linda7NJ]

Someone please be sure to post the video immediately when Justina is ice skating again!
Should be any day now, right?


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[annahanna]

Try justice for Justina


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I did. I found no record within the state of Connecticut records database. Did you get a different result?

*edited to add:
The charities found under the word "justice" include:
Justice Education Center
Justice Fellowship
Justice for Ceuvas
Justice Project Inc. - lapsed
Justice Resource Institute Inc. (this registration is now inactive and all JRI activities are consolidated under the Justice Education Center registration as allowed / stipulated under Connecticut law.)
Justice Strike Force Inc. - inactive

 

[jaunty-girl]

Does anyone know if it would be possible for Liberty Counsel to create a "campaign" called Justice for Justina and then use their own 501c3 to collect the funds? It appears, from my rudimentary search that the Pelletiers didn't start saying they had a non-profit, until rather early this year. Liberty Counsel sticking their noses in this situation, seems to coincide with the time frame.

I also wonder how much money they've actually collected. This story never got remotely as big as the KFC/mauled girl one did. My experience with the rabid, anti-government, hyper religious crowd is that they are really big on making calls, calling for everyone to be sued and fired and stating that they have no money but they will help by praying. I've worked with various animal related non-profits and even with thousands upon thousands of people commenting on their facebook pages, the donations vs prayer offers, is abysmal. Now granted, this is a different situation, but I'd think to an extent it would be similar. When I've peeked on in their facebook page, I've seen the comments about how the poster can't afford to donate but.... There has also been mention of a benefactor, who I would think would be in direct contact with the family. If that's the case and we're talking about a rather wealthy individual, I'm sure they would know exactly how to handle the tax situation with regards to assisting the family.

I'm of the opinion that the majority of the supporters that Justina's family has, are of the rabid "low information" ilk. They form their opinion on the hyperbole surrounding the case, as well as from a limited set of talking points. So if they are being misled about the status of their donations, it would not surprise me in the least. I also doubt that many of them itemize on their taxes, so the deductibility of their donations wouldn't really matter that much.

 

[jaunty-girl]

But wait, what growing medical expenses? At the point that the state of MA took over, they were footing the bill. What are they talking about? I realize this is a really stupid question.

 

[sweetmom]

But wait, what growing medical expenses? At the point that the state of MA took over, they were footing the bill. What are they talking about? I realize this is a really stupid question.

With this case, there are no stupid questions, but there sure are stupid answers by the family.

Food for thought: I have read that those scam emails we've all received about Nigerian bank accounts and winning foreign lotteries, etc., which are all designed to separate the gullible from their money or bank account info, are designed on purpose to be as outrageous and ridiculous as possible, because that serves to filter out anyone with an IQ above room temperature. That leaves them with the responders who are almost begging to be scammed.

IMO, the Justice/Miracle websites and the exaggerated nonsense and outright lies put out by the family to the press is being done for the same purpose: it disgusts and drives away those who might ask probing questions and leaves them with the very gullible and easy to manipulate supporters and donors who are intimidated by doctors and hospitals and courts and DCF, love to believe the worst about any institution or person they deem to be liberal, think their prayers for Justina have now been heard and just can't wait to cough up more money to "save" Justina and even worse, stokes Lou's political ambitions. IMO, that is the dynamic at work here.

 

[Linda7NJ]

wow, she is clearly standing at one point.

Yes she is!


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[Linda7NJ]

It appears to me that she's in the shallow end walking with her legs bent. IMO that would mean she's really working those thigh muscles...even with her being buoyant in water with a vest.
It's much harder to move about like that. IMO


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