forthelost
I hear the angels call my name and I am Winterborn
CHOP does have a good reputation; not any better than Yale-NH or BCH though. I agree how they hopscotch from one hospital to the next is bothersome.
DC - Justina gets standing ovation from Congress
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CHOP does have a good reputation; not any better than Yale-NH or BCH though. I agree how they hopscotch from one hospital to the next is bothersome.
txsvicki
Active Member
Justina must be claiming awfully bad pain if she couldn't even sit up in a chair to have her nails done.
I think they will keep switching hospitals and doctors until they get the answer they want or some state's DCF steps in again.
Justina has been evaluated and treated by a number of top-tier hospitals. With that caliber of care, I don't see how going to another hospital is going to help her. Whatever their reason, her family seems to. I have to assume that eventually they will be unable to get the transfers and referrals they want.
If the Pelletiers are making decisions based on reputation and hospital ranking, I understand the desire to take her to CHOP. Childrens Philadelphia is listed among the top 3 pediatric hospitals nationwide in 8 of 10 specialty areas - generally #2 or #3. They ranked #4 in the other 2 areas.(Boston Children's ranked #1 in 8 of 10 areas and #3 and #5 in the others.) If she can't go back to BCH, CHOP is a good choice. http://health.usnews.com/best-hospitals/pediatric-rankings.
Although NYC is a good place to seek care. Only Morgan Stanly cracks the top 10 - twice.
If our discussion of this sad and frustrating case has been good for anything, it's for the knowledge we have shared about hospitals for children. And I sure hope none of us will need it firsthand anytime soon...or ever. I'm hoping Annahanna's child is doing as well as possible.
I see that the Miracle site has now helpfully added a link to a PayPal account for those who want to help fund the Pelletier family's many endeavors. Be aware though: donations are not tax deductible (nor, IMO, is what they spend any contributed money on monitored by anyone outside the family) because their fund-raising site is not registered with the state of Connecticut. So donate at your own risk.
Just found a new and unabashed pitch for donations, posted by a Justin Reilly on behalf of Rev. Mahoney, on the #freejustina site.
It is helpfully addressed to: Dear <<First Name>>, which makes it so very very personal.
It says Justina's recent hospitalization was necessary because of all the awful things BCH supposedly did, and claims her new hospitalization proves her problems are not psychological. IMO, it does no such thing.
It attempts to tug the heartstrings of potential donors by saying before Justina was hospitalized, she took part in skating competitions. But research has shown the event was not a competition, but rather a holiday recital by the facility where her sister works, more like what your local dance academy does. It fails to mention that shortly after the no-real-competing "competition," she already was using a wheelchair, could not walk from her classroom down the hall to the cafeteria at her school for the learning disabled and then had to be hospitalized at CT Children's and then at BCH -- possibly due to the stress of performing on skates. IMO that was a bad idea her parents should not have agreed to.
Come to think of it, hauling Justina to Washington to testify shortly after her return to CT and then making her the star of a "sparkle" party happened just before she was sent to Yale-NH. IMO, there is a pattern there: the family stresses the poor kid out and back into the hospital she goes.
The pitch for money repeats a lot of the family's unproven accusations and says they need the money because Lou has been too busy/overwhelmed to actually do any work. It makes no mention of the anonymous billionaire who was supposedly funding their legal costs. It also says every penny will go to the family and only they will handle the money, which I guess is supposed to encourage giving, but IMO just confirms this "charity" has no oversight.
The whole thing reads like a pitch from a TV preacher.
IMO, Donator, beware.
It is helpfully addressed to: Dear <<First Name>>, which makes it so very very personal.
It says Justina's recent hospitalization was necessary because of all the awful things BCH supposedly did, and claims her new hospitalization proves her problems are not psychological. IMO, it does no such thing.
It attempts to tug the heartstrings of potential donors by saying before Justina was hospitalized, she took part in skating competitions. But research has shown the event was not a competition, but rather a holiday recital by the facility where her sister works, more like what your local dance academy does. It fails to mention that shortly after the no-real-competing "competition," she already was using a wheelchair, could not walk from her classroom down the hall to the cafeteria at her school for the learning disabled and then had to be hospitalized at CT Children's and then at BCH -- possibly due to the stress of performing on skates. IMO that was a bad idea her parents should not have agreed to.
Come to think of it, hauling Justina to Washington to testify shortly after her return to CT and then making her the star of a "sparkle" party happened just before she was sent to Yale-NH. IMO, there is a pattern there: the family stresses the poor kid out and back into the hospital she goes.
The pitch for money repeats a lot of the family's unproven accusations and says they need the money because Lou has been too busy/overwhelmed to actually do any work. It makes no mention of the anonymous billionaire who was supposedly funding their legal costs. It also says every penny will go to the family and only they will handle the money, which I guess is supposed to encourage giving, but IMO just confirms this "charity" has no oversight.
The whole thing reads like a pitch from a TV preacher.
IMO, Donator, beware.
Aww, thank you. My son is doing extraordinarily well thanks to amazing care from a team of doctors from BCH, Tufts, Nationwide Children's, and our local hospital. My child's medical situation has improved tremendously over the past few years and he will live a long and happy life. He will just spend a lot more time in the hospital, doctors office, or physical therapists gym then his friends. Like most families with chronically ill children, we want the very best of care for our kid. Sometimes that means a waiting list to see the best doctor. Sometimes it means out of control travel expenses with airfare, hotel, rental car, etc. It always involves open communication and mutual respect between the different members of his medical team(spread out across 3 states) the now teenage patient, and us - his parents. It always means extreme gratitude for the amazing doctors, nurses, PTs and OTs that we have been blessed to have met along the way.
My wish for Justina is that she be allowed to get better. She needs the gift of normalcy. I hope and pray that her family will allow themselves to accept Justina's diagnosis - whatever it may be. She will need her family's love and support for what looks like a long battle to come.
I wish I could say that I am surprised by the non-stop fundraising attempts. Unfortunately, I am not. I also found the ease with which Jennifer solicited gifts for Justina to be very concerning. Being ill has become a money maker - in my opinion.
I wish your son had no medical problems at all, but it is wonderful to know that he has had such excellent medical care and that he has a family that understands his condition and all the ramifications of treatment and therefore appreciates what the treatment has done and can continue to do for him. Since this is our week to be consciously thankful, I am thankful to hear that!
I totally agree that Justina needs her family to be rational and to put their resentments aside and just concentrate on doing what is best for her medically, whatever that may be. I wish her all the best.
As I have mentioned in earlier posts, I live in the same town as the Pelletiers, and it is a wonderful, caring place that supports many charities large and small with events, fundraisers, walks, etc. Hardly a week goes by without some such event being publicized and well-attended.
IMO, the fact that no neighbors or other town residents have publically stepped up to financially aid the family -- there have been no posts or newspaper or TV reports of any such support or fundraising events -- tells me those who know them best are not buying their stories of harm and hospital malfeasance.
My husband grew up in West Hartford, and I have spent a lot of time there. I, too, have wondered why there has been (apparently) no support for the Pelletiers in their home community. In many ways, WH is a small town, and there are things known to the locals which make the family unsympathetic. Poor Justina.
Yes, it is really atypical of my town. And I am sure if such events were planned, there would have been print or TV stories about them, before and after, as there are for so many others.
The only fundraiser that did get any press was their "Sparkle Party," which they themselves ran. The Miracle website claimed more than 1,000 people were invited, but the online counter said not even 100 (other than the family and Mahoney) actually bought tickets to attend. It was very shortly after that party (which apparently did not raise a lot of money) that Justina was first taken to Yale-NH, by the way. (IMO, that may have been a move to garner more sympathy and more donations). Then about a week later she was admitted for the long stay that is still going on.
The Pelletiers live in a wealthy neighborhood with fine views of the city to the east. I was always curious about why, in the stories that ran when Justina was still in BCH, no neighbors were interviewed and only a few kids who attended her school, the Ben Bronz Academy for learning-disabled children, were ever quoted....and they confirmed that she was already having problems walking and could not make it on foot from her classroom to the cafeteria. This was before she was admitted to BCH, so those who believe the hospital "paralyzed" her need to realize she could not walk unaided BEFORE she was taken to BCH.
No teachers or administrators from the school, no local clergy, no local doctors. I do not know if reporters tried to get comments and were rebuffed or if they simply did not bother.
I have always found the apparent lack of involvement by her neighbors, teachers, friends and doctors very odd. Nobody local seemed to step forward to vouch for the family or demonstrate/protest for her cause. The vast majority of Miracle for Justina supporters have never met her or her family.
There were 2 very early local fundraising attempts. One was a profit sharing event at a local ice cream shop (sweet frog). I did not see a report of how much money was raised. The other was a donation based on ticket sales to a Miracle on Ice Hockey Team event with the Whalers hockey team. Again, I have never seen an estimate of funds raised. Neither event seemed to be hugely popular.
If Justina received or is going to receive approval for a transfer to CHOP, I would expect the transfer to occur this week. Since her condition does not appear to be critical or life threatening, it makes sense that a transfer during Thanksgiving week did not happen. However, hospital to hospital transfers are not games. Generally, they need to be deemed necessary and appropriate by the doctors involved, approved by the receiving hospital, and authorized by the patient's insurance company. (Hospital to hospital transport across state lines is not inexpensive.) If it is approved by the doctors and hospital, but denied by the insurance company, an urgent appeal would be made with a mandated 48 hour turnaround time. Even with the holiday, there has been enough time for the powers that be to work out the details of this sort of deal. I will say that these sort of transfers are not often done unless the originating hospital lacks the ability or expertise to care for the patient, the receiving hospital has a special program not available elsewhere, or the transfer will bring the patient closer to their home. None of those things appear to be true in Justina's case.
This is, of course, my opinion only. However, I am concerned that the "Miracle for Justina" supporters are being mislead about the validity of a transfer to CHOP.
There were 2 very early local fundraising attempts. One was a profit sharing event at a local ice cream shop (sweet frog). I did not see a report of how much money was raised. The other was a donation based on ticket sales to a Miracle on Ice Hockey Team event with the Whalers hockey team. Again, I have never seen an estimate of funds raised. Neither event seemed to be hugely popular.
If Justina received or is going to receive approval for a transfer to CHOP, I would expect the transfer to occur this week. Since her condition does not appear to be critical or life threatening, it makes sense that a transfer during Thanksgiving week did not happen. However, hospital to hospital transfers are not games. Generally, they need to be deemed necessary and appropriate by the doctors involved, approved by the receiving hospital, and authorized by the patient's insurance company. (Hospital to hospital transport across state lines is not inexpensive.) If it is approved by the doctors and hospital, but denied by the insurance company, an urgent appeal would be made with a mandated 48 hour turnaround time. Even with the holiday, there has been enough time for the powers that be to work out the details of this sort of deal. I will say that these sort of transfers are not often done unless the originating hospital lacks the ability or expertise to care for the patient, the receiving hospital has a special program not available elsewhere, or the transfer will bring the patient closer to their home. None of those things appear to be true in Justina's case.
This is, of course, my opinion only. However, I am concerned that the "Miracle for Justina" supporters are being mislead about the validity of a transfer to CHOP.
The information about how hospitals handle transfers is very interesting and useful. Thanks for taking the time to explain it all so clearly. This is valuable information no matter how you feel about the family and its behavior.
Back to local reaction: It's not like no stories about Justina appeared in local newspapers and on local TV stations. In the early days of the BCH flap, there were plenty and almost all of them reported the family's side of things without checking to see if they were embellishing, exaggerating or just plain lying. But even then, no local fundraising or support groups sprang up. The comments on the various media sites came from all over the country, largely from followers of Glenn Beck or Huckabee or, IMO, from religious fanatics, but hardly a one from the town or greater Hartford area. Same phenomenon with the comments on the Miracle site and the home towns of those who attended the Sparkle party.
Nothing new on the Miracle site so far today about CHOP or anything else, for that matter. And the freejustina and justiceforjustina sites have nothing posted now but links to the Paypal account for donations.
One tiny correction: the local hockey team used to be the Wolf Pack, then became the Connecticut Whale. and then last May became the Wolf Pack again. Confusing, to say the least. The Hartford Whalers swam away years ago.
Back to local reaction: It's not like no stories about Justina appeared in local newspapers and on local TV stations. In the early days of the BCH flap, there were plenty and almost all of them reported the family's side of things without checking to see if they were embellishing, exaggerating or just plain lying. But even then, no local fundraising or support groups sprang up. The comments on the various media sites came from all over the country, largely from followers of Glenn Beck or Huckabee or, IMO, from religious fanatics, but hardly a one from the town or greater Hartford area. Same phenomenon with the comments on the Miracle site and the home towns of those who attended the Sparkle party.
Nothing new on the Miracle site so far today about CHOP or anything else, for that matter. And the freejustina and justiceforjustina sites have nothing posted now but links to the Paypal account for donations.
One tiny correction: the local hockey team used to be the Wolf Pack, then became the Connecticut Whale. and then last May became the Wolf Pack again. Confusing, to say the least. The Hartford Whalers swam away years ago.
I guess that tells you how long ago I moved away from the Hartford area. LOL!
There are still diehard Whalers fans living here, who continue to mourn the team's departure. They sorta-kinda support the Wolf Pack/ConnecticutWhale/Wolf Pack, but not with the fervor they had for the original Whalers.
I think Justina is now in Philadelphia. There is a new comment today on the Miracle page from a woman who says she is sitting with Linda in Children's Hospital and learning all about Justina. (Or at least, all about the family's version of the saga.)
I also found a tweet from this woman that mentions that she has a child in CHOP and a Google item saying her daughter was a Make-A-Wish recipient in 2009, so IMO, this is the same child.
So evidently Justina has been transferred. Nothing official yet from the family or the Rev. Mahoney.
I also found a tweet from this woman that mentions that she has a child in CHOP and a Google item saying her daughter was a Make-A-Wish recipient in 2009, so IMO, this is the same child.
So evidently Justina has been transferred. Nothing official yet from the family or the Rev. Mahoney.
Oh dear, just followed this woman's tweets. Her poor daughter has a fatal brain disease, and the mom is hoping for a reading from the Long Island Medium so that she can be assured someone will be waiting on the other side, as she puts it, when her daughter dies. Leaving aside that the LI medium is basically a fraud, if a kindly one, how very very heartbreaking it is to read that someone is so desperate as to need that kind of "help."
Count your blessings, Websleuthers.
Hiandmighty
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Am I incorrect that this is the first time her mother has been mentioned since the summer? I got the impression at the most recent hospital (Yale?) that her parents weren't there with her.
Since Yale-NH is only about 45 minutes from West Hartford, I think the parents were probably there with Justina a lot. It's the sisters, Jennifer mainly, and Jessica, who do most of the posting on the Miracle for Justina site. (Oldest sister Julia is rarely heard from.)
I believe that it was reported on social media and mainstream media that both parents were with Justianna at Yale New Haven Hospital. The recent push for fundraising was reported to be because her father was not able to work much while Justianna was at Yale New Haven.
The woman who posted on the "miracle" site apparently does have a seriously ill child who has been hospitalized at CHOP. It was not clear to me if her daughter was currentely inpatient at CHOP as her posts about that were from the summer. It is likely that Justina has been transferred and she was visiting with her at CHOP. However, it is also possible that she's visiting with her in Connecticut. I am suspicious about the validity of the transfer since there has been no announcement by the family or Rev Mahoney. Is it just me, or is it very strange that the family asks for prayers for the transfer to happen but then never lets their followers know if the transfer has actually happened?
The woman who posted on the "miracle" site apparently does have a seriously ill child who has been hospitalized at CHOP. It was not clear to me if her daughter was currentely inpatient at CHOP as her posts about that were from the summer. It is likely that Justina has been transferred and she was visiting with her at CHOP. However, it is also possible that she's visiting with her in Connecticut. I am suspicious about the validity of the transfer since there has been no announcement by the family or Rev Mahoney. Is it just me, or is it very strange that the family asks for prayers for the transfer to happen but then never lets their followers know if the transfer has actually happened?
I too find it very odd that the family has posted nothing new about the transfer, which may or may not have happened.
The woman I wrote about yesterday said she had met Linda Pelletier at Children's Hospital, which does sound like Philly, IMO. (People do not usually refer to Yale-NH as Children's Hospital.) That woman's daughter has Batten's Disease, a real horror of a degenerative brain disease. From what I could glean from Google and Twitter, the young woman (now 19) is still alive, but barely functioning. But the posts I saw might be out of date.
Did some further checking: the young woman is 17 and as of July (at least) she was in CHOP. The family lives in New Jersey. I do not see her mother's post on the Miracle site today, but others from yesterday are still there. Perhaps hers was deleted because it hinted that Justina is now at CHOP and the family does not want anyone else to reveal that before they do?