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A very serious topic, Munchausen by proxy, which I touched upon in my interview with WMHT, is currently being addressed by Mito Action.
I received a newsletter from Cristy Balcells the exec. director of Mito Action today, 7/17/13. If anyone has gone through / is going through this traumatic nightmare please contact Cristy directly at email@example.com
THANK YOU, MITOACTION!!!
Dear MITO Community and Supporters,
I just signed the petition "Audit Boston Children's Hospital and the
Department of Children and Families of Massachusetts for taking custody
of very sick children with no reasonable cause" on Change.org.
It's extremely important. Will you sign it too? Here's the link:
This email was sent by Change.org to firstname.lastname@example.org.
Start a petition on Change.org
Mailing address: Change.org. 216 West 104th Street, Suite #130, New York, NY 10025. USA
Audit Boston Children's Hospital and the Department of Children and Families of Massachusetts...www.change.orgParents are taking their sick children to BCH to get help for their sick children. They are either
THIS IS IMPORTANT TO EVERY ONE OF US IN THE MITO COMMUNITY!
PLEASE TAKE ACTION!!!
12/6/13UPDATE: 15-year-old girl held at Boston Children’s Hospital against parent’s will still not allowed to go home
Last month, Glenn shared the stunning story of Justina Pelletier,
a 15-year-old girl who has been stuck in a hospital for the last nine
months after the medical facility took custody of her when her parents
argued against her diagnosis.
The hospital claims that the parents over-medicalized the girl,
leading them to take custody. The parents have provided ample evidence
that every time they’ve taken their daughter to the hospital or to the
doctor, they did exactly what the doctors told them to do. But now the
family finds themselves in a bitter dispute to get their girl home. It’s
been ten months since they lost custody, and following the latest court
hearing, Justina was still not allowed to go home.
On radio this morning, Cristy Balcells, executive director of Mitoaction.org,
who is working with the Pelletier family to help them bring their
daughter home, joined Glenn to discuss how Justina is doing and how
people can help the Pelletier family. Learn more about Christy’s
organization and how you can help HERE.
Listen to the interview below. Applicable audio begins around the 1 hour 34 min mark:
Read a transcript of the interview below:
BALCELLS: Thank you so much, Glenn, and thank you so much for helping
to bring this issue to this level of awareness. It’s really
GLENN: This is — this is not — this is not the only case, and we’ll
get into that. But you have — since we started talking about it, you’re
getting calls from people all over the country saying, “This is
happening to me too.”
BALCELLS: It’s overwhelming. It’s phenomenal. You know, we had high
hopes yesterday because so many people have actually come forward to
share their story and we felt like we had such a huge show of support
from families, both in Boston and around the country, particularly who
have had this type of experience with a child with a rare chronic
disease at a children’s hospital, where everything that the parent was
doing was called into question and the parent was left powerless and was
basically accused of harming the child when they were just trying to do
the best they could to make their child better.
GLENN: I tell you, this is — this is criminal what’s happening.
Cristy, explain — explain, if you can. Tell quickly the story of what
happened yesterday and what this means for the family.
BALCELLS: Well, here’s what happened yesterday. Nothing. It’s so
incredibly frustrating. We had really — and thought that we were going
to see some progress because what else could we decide after 10 months
of holding this girl captive in the hospital. Really, you need another
week to get some more information? I’m flabbergasted and heartbroken for
this family, and I speak on behalf of I think the entire community of
parents who have children with chronic diseases and mitochondrial
disease when I say that. We’re horrified, and it really makes me lose
faith in the legal system. I already had lost faith, I think, in our
hospitals and in our medical system. As you know, I have a child who has
mitochondrial disease as well, and it’s an uphill battle. But to — I
had a little bit of faith left that the legal system would realize that
if the child had been in the hospital for 10 months and they couldn’t
make her better while she was away from her parents, then maybe that
original diagnosis should be reviewed again. And this little girl should
be home with her family.
GLENN: Okay. Hang on just a second.
BALCELLS: Instead they told them, they said, come back next week. We’ll talk about it some more.
GLENN: Okay. So it’s not that they haven’t made her better in 10
months. It is that she has actually gotten worse in 10 months, correct?
BALCELLS: She has gotten worse, and that’s probably one of the
saddest parts of this story as well. So the family is terrified. They’re
under such a strict gag order that the family is so afraid to open
their mouth even to ask for support from the people who are reaching out
to them to help because they think that if they even say one word
saying how they feel that that is going to be used against them as a
reason to prove that they’re negligent and that they won’t get their
GLENN: This is criminal.
BALCELLS: That’s the first thing. The gag order is flabbergasting to me.
GLENN: This is absolutely criminal. I mean, if there was anybody in
public office in the Northeast that I trusted, I would get them on the
phone. But this is — this is crazy. How can a parent have a gag order
and be told not to say anything? That’s their — it’s their child, for
the love of Pete. How can –
BALCELLS: It’s their child. Since when did you lose your right to
even be able to reach out to the people who are there saying “How can I
help you” and you’re supposed to say “I’m not allowed to talk about it.
My child is not with me. It’s almost Christmas and I’m not allowed to
talk about it.” I mean, the devastation on this family is just — can you
imagine having your child taken away from you?
GLENN: I have to tell you –
BALCELLS: I almost think it’s worse than the child dying because this is like a Purgatory that goes on forever.
GLENN: I have to tell you if I were the family, when this whole thing
is over, I hope to God that they get the biggest damn attorney they can
possibly find and sue this children’s hospital until their eyes bleed.
This is the — this — because this is not the only case of this. Tell me
about the doctor who is vested in — or maybe — you may not know this.
The doctor up at this hospital that is vested in this particular disease
that they’re trying to say the parents have inflicted on this young
girl. Do you know this part of the story?
BALCELLS: The doctor at Tufts.
GLENN: No, the doctor at — the doctor at Boston Children’s who is
vested in — yeah, who’s vested in the — what is the name of the disease
that children’s hospital is saying that she has?
BALCELLS: Somatoform disorder, psychiatric disease.
GLENN: Yeah, it’s a psychiatric disease. And this doctor who is at
Boston Children’s, this is — you know, she wrote her paper on this, this
is her disease. And she is — every single time this has happened in the
past, she’s been involved and she’s — I think she’s trying to make a
name for herself.
BALCELLS: Well, you know, it’s kind of one of those positions, if
your job is to be the naysayer of those things, you have to prove your
position’s worthwhile, right? You have to create work for yourself. I
mean, we see that all the time. I really don’t feel like any one doctor,
though, can truly be held responsible for this. I think that this is
just a horrific example of a broken –
BALCELLS: No one paying attention to common sense here, including the judge.
GLENN: So –
BALCELLS: I don’t understand.
GLENN: Okay. So Cristy, what can people do?
BALCELLS: So here’s what we’re trying to do as an organization. We’re
mounting an advocacy campaign asking for donations to try to help this
family mount an even larger legal response. And you can look at that at
mitoaction.org/advocacy. And, you know, I think that the social media
aspect is helping. I think that the national awareness and pressure from
the media is helping. The family does feel that they are in a corner
and they don’t know what else to do. So we hope that by showing our
support nationally, we can make a difference. We are talking now and
have reached out to the legislature to try to emphasize how unjust this
is and to ask for some transparency. I find it really appalling that in
all of this time, no one has asked Boston Children’s Hospital to be
transparent with their decision to really, to make a statement and that
it is always like the parent being crucified while the hospitals, you
know, stands at the top of the mountain. I find that, you know,
unspeakable, especially when in this case we’re talking about taxpayers
contributing their money to pay for this girl’s ten-month
hospitalization. Her family is not after money. They don’t want a dime.
They want their little girl to come back home. This child has no parents
right now. She hasn’t even been put into custody of, like, a family
member or an aunt and uncle or someone who could at least be acting like
a mom or a dad for her. She has no parent. She lives in a hospital
GLENN: And she is — she is in a psych ward, is she not?
BALCELLS: She’s in a psych ward at the hospital. With a guard.
GLENN: This is one of the –
BALCELLS: It makes you disgusted, right? It makes you sick.
GLENN: Oh, yeah. This is — this is the kind of stuff that, you know,
you read about in the 19 — you know, from the 1950s and Sixties where
you read about what they used to do to people who were, you know, crazy
and they would lock these people up in institutions, and you watch them
and you just turn away from it in disgust and you think, oh, thank God
we’re past that. No, we’re not past that. No, we’re not past that.
That’s what’s happening right here. We have a young girl who is sick.
Her parents are trying to do the best thing for her. The State has
decided they disagree with the parents and the State wins. What this is
saying to you, America, is you don’t have a right of your own child.
That child does not belong to you. That child belongs to the State.
They’re allowing you to take care of that child unless they disagree and
then the State takes. And this is not like, “Well, we’re just going to
say Jesus at her at the top of the hour and hope that she gets better.”
That’s not what this is. This is a child that was diagnosed with one
disease at Tufts University. She goes in for something else at Boston
Children’s. They decide that that’s — “We don’t agree.” They don’t have a
right to another opinion? They have to take Boston children’s Hospital
opinion and so because the parents said to hell with that; we’re taking
our child. The hospital goes to the court and takes custody of the child
and puts her in a psych ward. Meanwhile she could walk into the
hospital — now nine months later the girl can’t walk.
GLENN: Because she’s not about treated, she’s not being treated for what Tufts University said she –
BALCELLS: For what she has.
GLENN: It’s such an outrage. Listen, here’s what I would like you to
do. If you are able to donate any money, I would like you to go to
mitoaction.org, mitoaction.org/advocacy and make a donation and help
this poor family. This is a regular run-of-the-mill family. This is a
family that is already — they are trying to do the right thing for their
kid. This is not a crazy family, none of that stuff. I want you to go
to mitoaction.org/advocacy so these people can hire a really good
attorney, so they can have somebody on their side that is really giving
them a defense. Let’s see if we can get this child home for Christmas.
This is the biggest outrage. Go there and see if you can help out.
Cristy, thank you so much and we’ll talk to you again.
THANK YOU, TO ALL THE HEALTHCARE AND SUPPORT SERVICES PROVIDERS WHO ATTENDED OUR 2ND ANNUAL MITOCHONDRIAL DISEASE SYMPOSIUM ON NOVEMBER 13, 2013!
A recap and photos will be available soon on our EVENTS page.
MITO HOPE and HELP would also like to acknowledge and thank the following supporters for making our symposium possible:
Solace Nutrition, Empire Home Infusion Services, Nutricia NA, Vitaflo USA, The National PKU Alliance,
The Lake George Rotary Foundation,
The Thomas Patrick Morrison Foundation,
Double H Ranch, and St. Cecilia's Catholic Community of Warrensburg
MITO HOPE and HELP is a non profit 501(c) 3 program, sponsored by NYSARC Inc., Warren Washington and Albany Counties Chapter, www.wwarc.org
As a unified MITO community, we are dedicated to raising much needed awareness of Mitochondrial diseases.
We continually strive to represent, unite and offer support to hundreds of individuals and their families, living with and /or who have lost loved ones to, mitochondrial diseases throughout Northeastern NY. Most importantly, MITO HOPE and HELP
wants our local MITO community to know that they are not alone! We
care, understand and acknowledge what EVERYONE is dealing with!
MITO HOPE and HELP is also committed to funding local appropriate medical care and support services for MITO patients of all ages! Individuals living with Mitochondrial diseases require specialized, coordinated care administered by trained professionals. The medical community acknowledges the lack of appropriate medical care and services for these poorly understood, complex, chronic and incurable diseases. This void can be significantly filled by funding a nurse practitioner to work under the direction of Dr. Darius Adams, geneticist at Albany Medical Center.
Mito Hope and Help has established an endowment fund with Albany Medical Center specifically for this purpose. Your donations are greatly appreciated! We must raise $306,000.00 to reach our goal which includes 3 years salary, benefits and vehicle expenses to fund the position.
In addition, MITO HOPE and HELP networks with
organizations, institutions and support resources to disseminate
pertinent information to individuals and their families living with Mitochondrial diseases throughout our Northeastern NY communities.
any of you would like for MITO HOPE and HELP to speak at your church /
house of worship or for any other group please contact me at,
We can all make a difference!
This website is dedicated to everyone suffering with a Mitochondrial disease and their families, as well as those who have lost their lives to these devastating diseases.
HERE'S A WAY YOU CAN SUPPORT MITO HOPE AND HELP WHICH IS TOTALLY FREE AND EASY!
MITO HOPE and HELP has partnered with TD Bank through their Affinity Membership Program. Yearly TD Bank will issue MITO HOPE and HELP a donation based upon the supporters' balances in their TD Bank accounts.
If you're a TD Bank customer please take a few minutes and either call or visit your local TD Bank branch. Simply say, "I'd like to support MITO HOPE and HELP through TD Bank's Affinity Membership Program". Its that easy! There's NO paperwork involved, NO hassles, NO gimmicks, guaranteed! This is so easy and there is no cost, so why not?
Nothing is deducted from the supporters' account and its totally confidential between the supporter and TD Bank. Simply this is the universal means by which TD Bank has chosen to give back to the communities it serves. The easiest way is to call Marcella Towers, VP of the Warrensburg branch, at 518-623-2991.
If you're not already a customer, please consider becoming a TD Bank customer so you too can help support Mito Hope and Help!
Please ask family, friends and co-workers to help support MITO HOPE and HELP as well. TD Bank customers in other states can be enlisted also.
MITO HOPE and HELP was able to obtain the minimum 50 supporters needed, to qualify for this wonderful opportunity and a minimum yearly donation from TD Bank! However, the yearly donation amount is limitless! So please, help us continue this ongoing effort to support MITO HOPE and HELP!!!
VP. Store Manager Warrensburg,
TD Bank, America's Most Convenient Bank,
3852 Main Street,
Telephone - 518-623-2991
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