Hi, I have a 3yr old daughter with GS (Affects left side of face,
neck and left kidney) She's only had two minor ops (to correct her
cleft lip)and we've just been refered to birmingham childrens hosp
(uk). who are talking about a BAHA and Rib graft in the near future.
though reciently we've been contacted by a more local centre who say
they can do it better and sooner.

Problem is I'm not sure what all this involves let alone which group
should allow to treat my daughter!

The Doctors seem very good at giving you information that is either
above your head or not in debth enough and also seem to leave us
with a Vague Idea that there planing to do something, somewhen and
they'll tell us more later.

I recon I'm not asking the right questions. But I'm not naturally
assertive so I find it difficult to ask any at all.

Anyone else have this prob?

P.P

hi there i have a little girl she has gs and we have now been given a
cpap i would like to know about this from any one whom has one.
Also we will in the very near future have jaw graft from rib if
anyone can tell me about good and bad experiences of this id be
greatful. God bless noura xxx

__________________________________________________
Do You Yahoo!?
Tired of spam? Yahoo! Mail has the best spam protection around
http://mail.yahoo.com

hi there i have a little girl she has gs and we have now been given a
cpap i would like to know about this from any one whom has one.
Also we will in the very near future have jaw graft from rib if
anyone can tell me about good and bad experiences of this id be
greatful. God bless noura xxx

Hi! Shannon
My name is Sol Crespo I'm from Panama and I have a 11th months godenhar son.
He was born in march 28th, 2000. HE's healthy and beautiful. I can tell you
that at the begining this was very difficult for us (I'm 28 and my husband
34) but Alvaro Abdiel after hi's first major surgery demostraded to us that
he's is strong and he will overcome everything, and sure that your son will
do the same. I had the most horrible thinks when he was borned, today l can
say that We are blessed with Alvaro Abdiel, his our second child and his's
sister love him and protects him all the time.
I'm very please to give you any kind of support and friendship because I
know how hard is this, and fill that we are not the onlys with the problem
overcome things better.

BLESS you
Sol
----- Mensaje original -----
De: <shannonrudedog@...>
Para: <goldenhar@yahoogroups.com>
Enviado: Martes, 06 de Febrero de 2001 11:25 p.m.
Asunto: [GOLDENHAR] son with goldenhar


> This letter is to everyone out there with goldenhar syndrome or a family
> member with goldenhar. My name is Shannon, our son was born aug. 23,2000
with
> goldenhar.  He spent 6 weeks in NICU and then came home.  The hospital he
was
> born at told us to let him die because he was a complicated child and this
> was our first baby and we were young parents, (not to young, I'm 22,
husband
> is 29)  They told us there was no hope for our baby.  We started to search
> for doctors and found one in Ft. Lauderdale.  Our son has had his first
major
> surgery 4 weeks ago to correct to clefts in his lip.  We were told that he
> ranks #4 in severity in the usa.  I would love to here from other people
with
> gs for I would do anything for my son.  He is so precious to us.  I know
that
> GS isn't hereditary, but I am still nervous.  We decided to try again and
> have one more child.  I am now 5 weeks along and scared.  Any info. from
> anyone would be greatly appreciated.
>
> thank you,   shannon
>
>
>
>

This letter is to everyone out there with goldenhar syndrome or a family
member with goldenhar. My name is Shannon, our son was born aug. 23,2000 with
goldenhar.  He spent 6 weeks in NICU and then came home.  The hospital he was
born at told us to let him die because he was a complicated child and this
was our first baby and we were young parents, (not to young, I'm 22, husband
is 29)  They told us there was no hope for our baby.  We started to search
for doctors and found one in Ft. Lauderdale.  Our son has had his first major
surgery 4 weeks ago to correct to clefts in his lip.  We were told that he
ranks #4 in severity in the usa.  I would love to here from other people with
gs for I would do anything for my son.  He is so precious to us.  I know that
GS isn't hereditary, but I am still nervous.  We decided to try again and
have one more child.  I am now 5 weeks along and scared.  Any info. from
anyone would be greatly appreciated.

thank you,   shannon

My name is Sharon Lutz.  I gave birth to our daughter Kathryn Ann
("Kate")Lutz on St. Patrick's Day, March 17, 2000.  She was born with
Goldenhar Syndrome.  Her case was extremely bad and rare.  The right
side of her face and body was not as developed as the left.  She was
born with a single-ventricle heart and only one lung.  Her right ear
had malformed, her mouth (inside and out)had malformed.  Her right
side of the head and face was deformed.  She couldn't eat because she
couldn't suck or swallow.  Some of her ribs were malformed.  Her
esophogus was all curved and bent.  Her heart and liver had shifted
towards the center of her body.  Since she didn't have a right lung,
her arteries and and lung and the rest of her pulmonary system was
being stretched and strained.  When she was born she was immediately
put on a ventilator and after a couple of days was able to come off
the ventilator.  She was definately a fighter.  Kate fought her
battle to live in the NICU at Children's Hospital.  She had been
poked and prodded and gone through test after test.  Strangers
changed her diapers.  She was fed through a feeding tube.  Her O2
sats kept dropping, her heart rate would drop.  If she got upset she
would "crash" and had to have blow-by air to help her breathe and to
raise her O2 sats.  When she got really bad the nurses and doctors
had to bag her and use chest compressions to bring Kate back.  On
April 6, Kate had to be placed back on the ventilator because she
kept crashing over and over.  The doctors said that there was nothing
they or anyone could do for her and that she would just get worse and
worse as time went on and that Kate would never again be able survive
off the ventilator.  Even while Kate was on the ventilator, she would
crash.  On April 9, 2000, Kate's fight was over and she died
peacefully in her sleep in our arms when we took her off the
ventilator.  Our beautiful daughter is gone along with our hopes and
dreams.
The doctors told us that it was a fluke and that there was nothing we
could have done to prevent Goldenhar.  When Kate was forming inside
of me (around 3-7 weeks) the doctors thing that she had a blood clot
in her head which caused all the malformations.
We are very thankful for our family and friends and all the wonderful
doctors and nurses and other hospital staff that had helped us
through the pain.
Thank you for taking the time to read this.
Sharon

Subject: What every woman should know


>This was such a surprise to me, as I had never heard anything like it
>before, that I felt the need to pass it along to EVERY female in my
>address
>book!  I don't consider myself paranoid, but knowledge is better than
>ignorance in this case!!
>
>Check the labels of the sanitary pads or tampons that you
>are going to buy the next time, and see whether you spot any
>of the familiar signs stated in this email...... no wonder
>so many women in the
>world suffer from cervical cancer and womb tumors...... Have
>you heard that tampon makers include asbestos in tampons?
>Why would they do this? Because asbestos makes you bleed
>more . . . if you bleed more, you're going to need to use
>more.
>
>Why isn't this against the law since asbestos is so
>dangerous? Because the powers that be, in all their
>wisdom(not), did not consider tampons as being ingested, and
>therefore wasn't illegal or considered dangerous.
>
>This month's Essence magazine has a small article about this
>and they mention two manufacturers of a cotton tampon
>alternative. The companies are
>Organic Essentials@ (800) 765-6491 and
>Terra Femme @ (800)755-0212.
>
>A woman getting her Ph.D. at University of Colorado @
>Boulder sent the following: "I am writing this because women
>are not being informed about the dangers of something most
>of us use - tampons.
>I am taking a class this month and I have been learning a
>lot about biology and woman, including much about feminine
>hygiene. Recently we have learned that tampons are actually
>dangerous (for
>other reasons than TSS). I'll tell you this, after learning
>about this in our class, most of the females wound up
>feeling angry and upset with the tampon industry, and I for
>one, am going to do something
>about it. To start, I want to inform everyone I can, and
>email is the fastest way that I know how.
>
>Here is the scoop: Tampons contain two things that are
>potentially harmful: Rayon (for absorbency), and dioxin (a
>chemical used in bleaching the products). The tampon
>industry is convinced that we, as women, need bleached white
>products * in order to view the product as pure and clean.
>The problem here is that the dioxin produced in this
>bleaching process can lead to very harmful problems for a
>woman. Dioxin is potentially carcinogenic
>(cancer-associated) and is toxic to the immune and
>reproductive systems. It has also been linked to
>endometriosis and lower sperm counts for men-for both, it
>breaks down the immune system. Last September the
>Environmental Protection Agency (EPA) reported that there
>really is no set "acceptable" level of exposure to dioxin
>given that it is acumulative and slow to
>disintegrate. The real danger comes from repeated contact
>(Karen Houppert "Pulling the Plug on the Tampon Industry").
>I'd say using about 4-5 tampons a day, five days a month,
>for 38 menstruating years is "repeated contact", wouldn't'
>you? Rayon contributes to the danger of tampons and dioxin
>because it is a highly absorbent substance. Therefore, when
>fibers from the tampons are left behind in the vagina (as it
>usually occurs), it creates a breeding ground for the
>dioxin. It also stays in a lot longer
>than it would with just cotton tampons. This is also the
>reason why TSS (toxic shock syndrome) occurs.
>
>WHAT ARE THE ALTERNATIVES? Using feminine hygiene products
>that aren't bleached and that are all cotton. Other feminine
>hygiene products (pads/napkins) contain dioxin as well, but
>they are not nearly as dangerous since they are not in
>direct contact with the vagina. The pads/napkins need to
>stop being bleached, but obviously tampons are the most
>dangerous.
>
>So, what can you do if you can't give up using tampons? Use
>tampons, that are made from 100% cotton, and that are
>UNBLEACHED. Unfortunately, there are very, very few
>companies that make these safe
>tampons. They are usually only found in health food stores.
>Countries all over the world (Sweden,German, British
>Columbia, etc.) have demanded a switch to this safer tampon,
>while the U.S. has decided to keep us in the dark about it.
>In 1989, activists in England mounted a campaign against
>chlorine bleaching. Six weeks and 50,000 letters later, the
>makers of sanitary products switched to oxygen bleaching
>(one of the green methods available). (MS magazine, May/June
>1995).
>
>WHAT TO DO NOW: Tell people. Everyone. Inform them. We are
>being manipulated by this industry and the government, let's
>do something about it! Please write to the companies: Tampax
>(Tambrands),
>Playtex, O.B., Kotex. Call the 800 numbers listed on the
>boxes. Let them know that we demand a safe
>product- ALL COTTON UNBLEACHED TAMPONS.
>
>Reminder:
>P.S. In order not to lose the impact of this email, I
>suggest that anyone who want to forward to your friends,
>PLEASE copy this mail and paste to a NEW message. That way
>will not distort the
>whole message with all the forward arrows. Please do this
>with consideration and seriousness. Thanks!

The following is a message I recieved via another list that I am on, but
hits a subject close to home none the less. Whether this is true or not...
it is something that we all should take into concideration, for our mutual
safety.
Anyone who "chats" regularly can tell you there are a lot of people that are
out to scare you.
I for one, have met my share of them. And have had my own little scare with
a guy that virtually stalked me.
It didn't get to the point of him coming to my home town, but it seemed that
any time I went online to chat... there he was. I finally ended up changing
my screen name and going to a different chat room for a while.
As most of you know, I am a very friendly person, and like to help people
when I can. During my "chat" days, I would spend endless hours online
tutoring people on how to use their computers and specifically a chat
program that I always used.
My caring and helping manner finally got me into a spot that scared me.
The guy that I was talking to told me that he was paralized from the neck
down, and continued to tell me what his interests were and how he kept his
spirits up... the whole sob story. (Yes I know... I don't sound like my
normal caring self telling this.) After chatting with this guy for over an
hour, he finally came to the point and told me what he wanted from me. He
wanted me to talk sex with him... nope, not me, you've chosen the wrong lady
here. I'm happily married and I view that as cheating on my husband and I
won't do it! Yes, I got very upset with him... when he kept talking about
it, I finally disconnected from the net for a couple of hours. When I went
back online a few hours later to talk to some friends of mine... he was
still there... was the only one there... so I didn't enter the room, instead
I chose a different chat channel to join to talk to other friends.
What happened next shocked me... he sent me a dcc (dedicated chat, which is
very similar to a whisper) I couldn't beleive that he knew I was online. He
said Hi to me, then proceeded to ask me why I left chat earlier. I just
answered that I didn't want to talk to him any more. (I shouldn't have even
responded to him!)
This type of harrassment continued for over a week, and finally ended with
me changing my screen name and talking to administrators from the chat
server. I was lucky, but there are many who are not.
Please keep yourself and your loved ones safe.
My love and safe thoughts to you all.
Barb.
---
(forwarded message)
TRY AND REMEMBER TO DELETE THE NAMES ON E-MAILS THAT YOU FORWARD.  IT MIGHT
DO US ALL WELL TO DO THE SAME.

I just got some important information from a friend concerning forwarding
messages to other group lists, which I find very interesting, especially
because I have personally received phone calls from people I don't even know
who got my personal information through messages that were forwarded to them
from people that I sent it to.  The following story is not a joke, it is
very true.  Please read.  The following individual asked not to be
identified, but she asked that this letter be forwarded to anyone who does
not Bcc (blind carbon copy) online...and to spread the word.

Late one evening, while online, I received an IM Internet message)from a
gentleman who said he knew me through mutual pals online.  We chatted for an
hour or so before deciding to keep in touch, as we had so many things in
common.  I eventually, after a week or so of knowing him,trusted him with my
name (first name) and phone number; after all, he knew my friends and I
felt he must have been ok if they all liked and knew him.  He knew a lot
about them, he knew a lot about me, and he knew a lot about a lot!  He
seemed like such a nice person, a pleasant person, and someone whom I felt
very comfortable sharing my time online (and on the phone)
with.

One night, a friend from our group of friends invited me to a chat room
where several of the friends had gathered and were chatting when this
gentleman popped into the chat room.  He popped in and then left quickly.
Then, for the first time since I met and started chatting with him, I
mentioned him to one of the friends who were in the chat room one whom this
gentleman claimed association with.  She was in total awe, she did not know
who he was!  Things were beginning to look really suspicious.The more she
and I chatted, the more suspicious it became.  It also became apparent that
this guy knew none of us. Suddenly, he disappeared off-line for a few
days...then one day he pops back in and sends me an IM saying that we need
to talk.  He called me at my
home and I was very upset, so I asked him how he really found me and why he
had felt the need to lie in the first place.  This is where you all need to
pay attention: He told me that he spotted my screen name on a forward that
one of my friends sent to someone else.  My screen name is what attracted
him. He then used the screen name of others on the list of forwards to
acquaint himself with me and various others from our clique of friends.  He
also used the member directory (at AOL) to look up info about others on the
list of forwards, so not to look suspicious. He said he felt it was the only
way he would have the chance to get to know me, and the main attraction to
me was "My Screen name "because he thought it was "sexy!" I was upset,
needless to say, as I had trusted this man with my personal info...  such as
phone number and name.  He also knew where I
lived (thanks to the phone bill) and I was now his prey! A few days after
having last talked to this person and thinking that was the last of him, I
received a phone call at 4 am, it has this man telling me he was in town to
see a friend who lived 20 minutes from my house, and wanted
to know if I would like to meet him for coffee or breakfast.  When I told
him it was not such a good idea, he became irate and hung up on me.  I
immediately called him back (caller ID) and explained to him that my husband
was back home (trying to scare him) and to please not be so mad (in fear of
him and what he might do).  Telling him that my husband had returned and we
were reconciling was a lie, I told him this to make him think I was not
alone! Imagine the feeling I felt in the pit of my stomach when he came back
with the following response: You're a lying bitch,your husband is not there
with you...you are alone!" I hung up on him and immediately called the
Broward County Sheriff's office and told them what had happened.  They sent
an officer over to take a report and said that was really all they could do
for me at that time.  So, I packed a few belongings into my car, and drove
to my sister's home for the night.
Fifteen or twenty minutes after I arrived at her home, I received a phone
call from this man again!  He knew I called the Sheriff and reported him, he
knew where I was and he knew my sister and her husband's names!  People, let
me tell you something, this man had been stalking me for weeks and I had no
idea!  I walked, ate, slept and breathed in constant fear until he was
finally arrested for stalking!  Not for stalking me!  Nope!  For stalking
another lady who lived in Kendall, FL.  Friends, when you forward things and
you leave your friends' names out in plain view like that, you are putting
THEM and YOURSELF in what could be grave danger.  I hope I have gotten this
message across; as I have not even begun to mention his assault (rape, using
deadly force) charges the detectives from Broward County and Kendall, FL
uncovered on him while investigating his prior history!  People, please! Be
safe, be careful and BLIND COPY (BCC)!

PLEASE REMEMBER: It is important to remove ALL personal email information
when forwarding items from this, or any other list to individuals or other
discussion groups (unless the message asks readers to contact them via email
or phone).  Remember, a lot of us have a great deal of information in our
sig's (signature files)that appear at the bottom of many of our messages).
In addition, the blind carbon copy (Bcc) option makes the individuals you
send email to unseen by all other recipients.
E-mailers should also cut out email addresses from forwards when forwarding
the message on.  I know I have received unsolicited e-mails from individuals
who have gotten my address via a forwarded message from this group. Although
more annoying than serious, it could have been worse.  Please take heed and
use email responsibly.

--
Please stay safe my friends.

Note from Barb:
How many of you remember taking anything like this while pregnant, or around
the time where you might have been pregnant?
I personally remember taking Tylenol Cold Tablets while pregnant, because I
was told that Tylenol was safe to take...

New Studies Link Cough Syrup
Ingredient To Birth Defects
Dextromethrophan, a common ingredient in cough syrups and tablets such as
Robitussin, Nyquil and Tylenol Cold has caused severe birth defects in
chicken embryos. The malformations included neural tube defects such as
spina bifida, facial defects like cleft palate and cranial defects. The
study by Dr. Thomas Rosenquist and his colleagues at the University of
Nebraska was published in the January issue of Pediatric Research.
This research adds weight to recently reported findings from the
Baltimore-Washington Infant study in which a history of cough medicine was a
risk fact for congenital malformations in babies.
Dr. Rosenquist stated, "We found that dextromethorphan causes defects so
early in the development of the embryo that in many cases the woman wouldn't
even know she was pregnant. We feel that a single dose is capable of causing
a birth defect and that, ultimately, it could be the cause for a woman to
have a miscarriage".
Dextromethorphan suppress coughing by acting on receptors in the adult
nervous system, but in embryos, the drug appears to "knock out" the
receptors, leading to birth defects
( as noted in the February issue of the Association of Birth Defect Children
newsletter. http://www.birthdefects.org/Newsletter/98febnews.htm )


[This message contained attachments]

-----Original Message-----
From: J'Anne Hicks [mailto:jmhhh@...]
Sent: Wednesday, February 09, 2000 3:46 PM
To: Michael J. Schappacher; Goldenhar Syndrome; Lanna L. Waterman; Lanna
Waterman; Betty Wortham; Robin Ahrens; Rasmus og Alice; Allmember;
Allmembers; Dave and Cathy Arnold; Mark Beard; Danielle; J'Anne Hicks;
Wendy Hicks; Kelsey/Robin; Kelsey/Robin; sobaldrick kevins; Steve Lucas;
James McDermott; Barb Miles; Barb Miles; John Morrison; karen potter;
rebele; Doris Ryder; Dr Sanii; Charles and Marie Schappacher; John
Schappacher; Kevin Schappacher
Subject: Fwd: Heart Attack - Please read it could save your life.




--- Rahrens77@... wrote:
> From: Rahrens77@...
> Date: Tue, 8 Feb 2000 14:33:58 EST
> Subject: Fwd: Heart Attack - Please read it could
> save your life.
> To: Jmhhh@...
>
>
>

> ATTACHMENT part 2 message/rfc822
> From: "Joan E. Antonelli" <jant2@...>
> To: "Jeffrey Antonelli" <antonelj@...>,
>         "Sheila Oliver" <sheilao30@...>,
>         "Shirley Howard" <smhwhisp@...>,
>         "Kathy Wiley" <irish10@...>,
>         "Pat Marciniak" <patsew@...>,
> "Terri Juen"
>  <tj21844@...>,
>         "Robin Ahrens" <Rahrens77@...>,
>         "Larry Layman" <lklayman@...>,
>         "Barbara Cloude" <bcloude@...>, "Marlis
> Aaron"
>  <Marlis@...>,
>         "Judy Slack" <jslacbdf@...>, "Jill
> Polli"
>  <japolli@...>,
>         "Mickey Eade" <mickyeade@...>
> Subject: Heart Attack - Please read it could save
> your life.  J
> Date: Tue, 8 Feb 2000 13:13:03 -0500
>
> > Surviving A Heart Attack...
> >
> > Let's say it's 6:15 p.m. and you're driving home,
> (alone of course)
> > after an unusually hard day on the
> > job. You're really tired, upset and  frustrated.
> All of a sudden you
> > start experiencing severe pain in
> > your  chest that starts to radiate out into your
> arm and up into your
> > jaw.
> > You are only about five miles from the hospital
> nearest your home,
> > unfortunately you don't know if you'll
> > be able to make it that far.
> > What can you do?
> >
> > You've been trained in CPR but the guy that taught
> the course neglected
> > to  tell you how to perform it
> > on yourself.
> >
> > HOW TO SURVIVE A HEART ATTACK WHEN ALONE
> >
> > (Since many people are alone when they suffer a
> heart attack, this
> > article  seemed in order.)
> >
> > Without help the person whose heart stops beating
> properly and who
> > begins to feel faint, has only about
> > 10 seconds left before losing consciousness.
> However, these victims can
> > help themselves by coughing
> > repeatedly and very  vigorously. A deep breath
> should be taken before
> > each cough, and the cough
> > must be deep and prolonged, as when producing
> sputum from deep inside
> > the chest. A breath and a
> > cough must be repeated about every two seconds
> without let up until help
> > arrives, or until the heart is
> > felt to be beating normally again.  Deep breaths
> get oxygen into the
> > lungs and
> > coughing movements squeeze the heart and keep the
> blood circulating.
> > The squeezing pressure on  the heart also helps it
> regain normal rhythm.
> >
> > In this way, heart attack  victims can get to a
> phone and, between
> > breaths, call for help.
> >
> > Tell as many other people as possible about this,
> it could save their
> > lives!
> >
> > >From Health Cares,  Rochester General Hospital
> via Chapter 240's
> > newsletter AND THE  BEAT GOES ON...  (Reprint from
> The Mended Hearts,
> > Inc.
> > publication, Heart  Response)
> >
> > Alan M. Kaplan, Ph.D.  Professor and Chairman
> Department of
> > Microbiology
> > & Immunology  University of Kentucky  MS409
> Medical Center  Lexington,
> > KY
> > Telephone - 606-323-8966  Fax - 606-257-8994
> Internet:
> > >akaplan@... <mailto:akaplan@...>
> >
> >
>
>
__________________________________________________
Do You Yahoo!?
Talk to your friends online with Yahoo! Messenger.
http://im.yahoo.com

-----Original Message-----
From: J'Anne Hicks [mailto:jmhhh@...]
Sent: Thursday, February 03, 2000 1:44 AM
To: Kevin Schappacher; Marie Schappacher; Michael J. Schappacher;
Goldenhar Syndrome; Lanna L. Waterman; Lanna Waterman; Betty Wortham;
Rasmus og Alice; Allmember; Allmembers; Dave and Cathy Arnold; Colleen
Barton; Mark Beard; Danielle; J'Anne Hicks; Wendy Hicks; Linda Hogg;
Kelsey/Robin; Kelsey/Robin; sobaldrick kevins; Steve Lucas; James
McDermott; Barb Miles; Barb Miles; Russell and Karen Potter; rebele;
Doris Ryder; Dr Sanii; Charles and Marie Schappacher; John Schappacher
Subject: Fwd: [goldenharsyndrome] FW: Virus Alert!




--- Barb Miles <bbds.page@...> wrote:
> To:     "Goldenhar @ Onlist"
> <goldenhar@onelist.com>, "*GoldenharSyndrome @
> Onelist" <goldenharsyndrome@onelist.com>
> Date: Wed, 2 Feb 2000 11:15:36 -0700
> From: "Barb Miles" <bbds.page@...>
> Reply-to: goldenharsyndrome@onelist.com
> Subject: [goldenharsyndrome] FW: Virus Alert!
>

<HR>
<html><body>
<tt>From:</tt> <tt>
&quot;Barb Miles&quot; &lt;bbds.page@...&gt;</tt>
<br><br>
<tt>
<BR>
<BR>
-----Original Message-----<BR>
From: Lyndze Gladney [mailto:lyndze_g@...]<BR>
Sent: Wednesday, February 02, 2000 10:38 AM<BR>
To: littlesister18@...;
joeljessica@...;<BR>
hellokitty701@...; navrie@...;
goldenhar@...<BR>
Subject: Virus Alert!<BR>
<BR>
<BR>
Goldenhar Syndrome - <a
href="http://i.am/bbds.page/">http://i.am/bbds.page/</a><BR>
<BR>
<BR>
Virus warning<BR>
<BR>
<BR>
  PLEASE BE CAREFUL!!!<BR>
This is real and was featured on ZDNet<BR>
PASS THIS ON TO ANYONE YOU HAVE AN E-MAIL<BR>
ADDRESS FOR.<BR>
IT IS REAL AND NOT A JOKE!!<BR>
<BR>
If you receive an email titled &quot;It Takes Guts to
Say Jesus&quot;<BR>
DO NOT OPEN IT.<BR>
<BR>
It will erase everything on your hard drive. This
information was<BR>
announced yesterday morning from IBM. AOL states that
this is a very<BR>
dangerous virus, much worse than &quot;Melissa,&quot;
and that there is NO remedy<BR>
for it at this time.<BR>
<BR>
Some very sick individual is using the reformat
function from Norton<BR>
Utilities causing it to completely erase all documents
on the hard<BR>
drive.<BR>
<BR>
It has been designed to work with Netscape Navigator
and<BR>
Microsoft Internet Explorer. It destroys Macintosh and
IBM<BR>
compatible computers. This is a new, very
malicious<BR>
virus and not many people know about it.<BR>
<BR>
Pass this warning along to EVERYONE in your address
book and<BR>
please share it with all your online friends ASAP so
that this<BR>
threat may be stopped.<BR>
<BR>
Please practice cautionary measures and tell anyone
that may<BR>
have access to your computer.<BR>
<BR>
Forward this warning to everyone<BR>
<BR>
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-----Original Message-----
From: Lyndze Gladney [mailto:lyndze_g@...]
Sent: Wednesday, February 02, 2000 10:38 AM
To: littlesister18@...; joeljessica@...;
hellokitty701@...; navrie@...; goldenhar@...
Subject: Virus Alert!


Goldenhar Syndrome - http://i.am/bbds.page/


Virus warning


  PLEASE BE CAREFUL!!!
This is real and was featured on ZDNet
PASS THIS ON TO ANYONE YOU HAVE AN E-MAIL
ADDRESS FOR.
IT IS REAL AND NOT A JOKE!!

If you receive an email titled "It Takes Guts to Say Jesus"
DO NOT OPEN IT.

It will erase everything on your hard drive. This information was
announced yesterday morning from IBM. AOL states that this is a very
dangerous virus, much worse than "Melissa," and that there is NO remedy
for it at this time.

Some very sick individual is using the reformat function from Norton
Utilities causing it to completely erase all documents on the hard
drive.

It has been designed to work with Netscape Navigator and
Microsoft Internet Explorer. It destroys Macintosh and IBM
compatible computers. This is a new, very malicious
virus and not many people know about it.

Pass this warning along to EVERYONE in your address book and
please share it with all your online friends ASAP so that this
threat may be stopped.

Please practice cautionary measures and tell anyone that may
have access to your computer.

Forward this warning to everyone

__________________________________________________
Do You Yahoo!?
Talk to your friends online with Yahoo! Messenger.
http://im.yahoo.com


______________________________________________________________________
To unsubscribe, write to Goldenhar-unsubscribe@...
Start Your Own FREE Email List at http://www.listbot.com/links/joinlb

-----Original Message-----
From: KimmyS1996@... [mailto:KimmyS1996@...]
Sent: Tuesday, February 01, 2000 10:44 AM
To: Goldenhar@...
Subject: Re: painfull


Goldenhar Syndrome - http://i.am/bbds.page/

Christine,

I'm sorry to hear of your loss.  I can't say that I've ever experienced a
miscarriage that I've known about, but my son's nurse (Alex) is 11 weeks
pregnant with her third child and this is her third pregnancy in the last
year.  She miscarried in April and in August and this pregnancy has made it
past the other two and she's feeling good.  There is hope!  Never give up.
I
truly believe that it is in God's hands.

Good luck.

Kim Heim


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-----Original Message-----
From: Tiggr6998@... [mailto:Tiggr6998@...]
Sent: Tuesday, February 01, 2000 7:40 AM
To: Goldenhar@...
Subject: painfull


Goldenhar Syndrome - http://i.am/bbds.page/

hello. I just wanted to full you all in with the terrible news that i just
received yesterday. I was spotting and getting blood clots so my ob called
me
in for an ultrasound and when i had my ultrasound i seen the baby but there
was no heartbeat and my body realized something was wrong. I am so
heartbroken because i was really looking forward to having another child.
Now
i am little scared to try again because this is my second miscarriage. Have
any of you had two miscarriages then the third try was perfect? My husband
wants to try again when i am able. But my heart says yeah but my mind is
telling me no. If i try again and it happens again i told my husband that i
am done. Should i have my ob test me and my husband? The head and everything
looked ok so i dont know if it was the chromesomes or if it just got wrapped
around it the cord. I should have been 12 wks pregnant but the fetus only
measured 9 wks. and he was showing where the heartbeat should be but there
was nothing and we watched for bout 5 to 8 mins. I hope someone can help me
decide if i should try again or not. Thank you so much for listening.
Christine (mother to Samantha, 2, w/gs)


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To unsubscribe, write to Goldenhar-unsubscribe@...
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-----Original Message-----
From: Lyndze Gladney [mailto:lyndze_g@...]
Sent: Saturday, January 29, 2000 11:37 PM
To: goldenhar@...
Subject: phone number fraud


Goldenhar Syndrome - http://i.am/bbds.page/

Hello everyone,

just thought I'd make all you computer users aware of this:
There is someone, or something (computer?) that is dialing an 800
number and after 3 minutes transferring to an over seas number in South
East Australia, watch your phone bills (especially customers of
Southwestern Bell, Pacific Bell, Bell Atlantic ect.) the number is
067-866-0590, it appears to come from and adult entertainment site.
There are also three or four more numbers that con come up but I don't
have them.

Sorry to take up your time for something other than the list, but I
wanted to let everyone in my address book know.

Lyndze Gladney.


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-----Original Message-----
From: Barb Miles [mailto:bbds.page@...]
Sent: Friday, January 28, 2000 1:20 PM
To: *Goldenhar Syndrome List
Subject: Amazing Women


Goldenhar Syndrome - http://i.am/bbds.page/

This is not sent to say that women are more important than men, it is just a
little insite into what makes us who we are...

Amazing Women
-------------
Women have strengths that amaze men.
They carry children, they carry hardships,
they carry burdens but they hold happiness, love and joy.
They smile when they want to scream.
They sing when they want to cry.
They cry when they are happy and laugh when they are nervous.
They fight for what they believe in.
They stand up for injustice.
They don't take "no" for an answer when they believe there is a better
solution.
They go without new shoes so their children can have them.
They go to the doctor with a frightened friend.
They love unconditionally.
They cry when their children excel and cheer when their friends get
awards.
They are happy when they hear about a birth or a new marriage.
Their hearts break when a friend dies.
They have sorrow at the loss of a family member, yet they are strong
when
they think there is no strength left.
They know that a hug and a kiss can heal a broken heart.

Women come in all sizes, in all colors and shapes.
They'll drive, fly, walk, run or e-mail you to show how much they care
about
you.
The heart of a woman is what makes the world spin!
Women do more than just give birth.
They bring joy and hope.
They give compassion and ideals.
They give moral support to their family and friends.
Women have a lot to say and a lot to give.


______________________________________________________________________
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-----Original Message-----
From: karen Matthew [mailto:kmatthew2@...]
Sent: Friday, January 28, 2000 8:02 AM
To: goldenhar@...
Subject: Moving


Goldenhar Syndrome - http://i.am/bbds.page/

Hi,

I know once in a while I do actually have something to say.

There are some terrific doctors in Atlanta.  We will be taking Jennifer
to Scottish Wright Hospital for her ear reconstruction surgery in a few
years.  I met a woman whose child had it done there and they are very
pleased.  Also they have a terrific cranial-facial team at that hospital
as well as at Emory Hospital.

I would like to see if we could meet once you move down as we live in
Simpsonville SC which is only about 2 hrs away.  It would be nice to meet
face to face with someone else with GS child.  And besides who wouldn't
want to live in the south.  It is great here.  We are Southern
transplants from Chicago and glad every day of it.

Karen,  mother to  20 mo. twins Jennifer with GS and Jessica unaffected
and 4 year old Mitchell


If you would like to see the children, please go to..
http://www.homestead.com/kmatthew/index.html

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-----Original Message-----
From: Leah Z. Stock [mailto:innana@...]
Sent: Thursday, January 27, 2000 10:21 PM
To: Goldenhar Syndrome
Subject: Re: thankyou


Goldenhar Syndrome - http://i.am/bbds.page/
Hey Sweetie,

I just calls 'em like I see 'em!  Be good to yourself. Warmly, Leah

Lisa Velickovich wrote:

     Goldenhar Syndrome - http://i.am/bbds.page/Dear Leah (and Barb too),
Thankyou so much for both of your kind letters.You don't know how it feels
to have people read your letter and say all those kind things.I didn't know
so many people would read it and enjoy it so much.I really appreciate your
kind words.I better go.Talk to you all soon.                  Love Natalie


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[This message contained attachments]

-----Original Message-----
From: danielle23@...
[mailto:danielle23@...]
Sent: Thursday, January 27, 2000 9:42 PM
To: goldenhar@...; goldenharadults@onelist.com
Subject: [goldenhar_adults] CHAT FOR ADULT GS'ers


From: <danielle23@...>

Hi All,

I just want to let the Adults with GS know that we are planning a chat on
IRC ...
So if you can make it we would love to see you ! ..
if you dont have IRC than you can download it from www.mirc.co.uk (i think)
:) ..

it is at 12 am ET (I know - sorry for the late night) .....
on this Saturday (morning) (29th) ........
(So thats about 24hours from now  -  if my calculations are correct) :P ...

We are using the STARLINK server - and the room is called #the_lounge

Please come and join us - and also any adults that haven't joined the GS
Adults list - then you can do so at goldenharadults@onelist.com - we are
only a small group at the moment - but the more the merrier as they say! ...

Zanna and I are going to be totally depressed if we are the only ones that
turn up!!!!!! ..

Look forward to hearing and seeing you.

Regards,

Danielle
Co-Moderator of Goldenharadults@...


(sorry Barb, had to do it!) :) - I Have a title!! WOOHOO!!!!!!!!........ :)

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-----Original Message-----
From: Lisa Velickovich [mailto:madison888@...]
Sent: Thursday, January 27, 2000 4:33 AM
To: Goldenhar Syndrome
Subject: thankyou


Goldenhar Syndrome - http://i.am/bbds.page/

Dear Leah (and Barb too),

  Thankyou so much for both of your kind letters.You don't know how it feels
to have people read your letter and say all those kind things.I didn't know
so many people would read it and enjoy it so much.I really appreciate your
kind words.I better go.Talk to you all

soon.
                   Love Natalie


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[This message contained attachments]

-----Original Message-----
From: The DesJardins Family [mailto:barjo@...]
Sent: Wednesday, January 26, 2000 8:44 PM
To: Goldenhar Syndrome
Subject: Re: Moving Day


Goldenhar Syndrome - http://i.am/bbds.page/

Dear GS "Group",
    We too are moving soon I hope.  Shaun has taken a job in Clarkston,
Washington which is just across the river from Lewiston, Idaho where we are
now.  We are putting our home on the market by the first of Feb. and are
making an offer on a home there.  Unfortunately a lot of our belongings will
be put in storage for a while.  This includes our computer and desk.  I will
have to read the GS letters from his computer after work if it is ok.  If
not, then somewhere else.  We will probably check it only once or twice a
week.  I will answer letters ASAP.  Good luck on your move Barb and we would
like to be kept on the list wherever it ends up.  Thanks.
    Oh, I probably never reported on the heart appointment.  You see, it
didn't happen because the tech that works for the doc is off for a week.  I
think they said from an injury.  They rescheduled for Feb. 15th.  We had an
appointment with the intestinal doc the following day and then the day after
that a nutritionist.  We were going to base many decisions on this heart
app.  How unfortunate that it had to be changed.  Our next extra little
bonus worry is that we will be in paperwork limbo during her heart surgery,
and neither state will have us on their Medicaid at that time.
    P.S.
We are still looking for info on imperforate anus (not what it is, but how
the healing process goes).
    Great to see more new people and hear input from them.  HELLO!
Barbara Jo (wife of Shaun, mom to Candice 19, Chris 18, and Shauna 14mo.
with GS.
     P.S. Again...
If any of the older members have had intestinal surgery or heart surgery or
"heart disease" please write to us as we are just sick worrying about Shauna
(how she is feeling, what she is experiencing...) because of all this.  She
is still too young to tell us!!!
    THANKYOU
----- Original Message -----
From: Barb Miles <bbds.page@...>
To: *Goldenhar Syndrome List <goldenhar@...>
Sent: Wednesday, January 26, 2000 1:10 PM
Subject: Moving Day


> Goldenhar Syndrome - http://i.am/bbds.page/
>
> Well it is finally official, my family (Scott, Sara and myself) will be
> moving in a months time. I dread this move most of all though, because I
> will be packing by myself, moving away from family, and most importantly,
> having to take Sara out of a program that has benefitted her so much.
> She's a changed little girl from only 4 months ago when she started
> "school". Every day I am seeing differences in her, and in a way I am very
> afraid to have to take her away from this program.
> Her speech has grown by leaps and bounds, she's running and jumping like
> every kid on the street, and she's made some very special friends.
> I know the move will be hard on her, so I hope I will be able to
coordinate
> a program for her in Wainwright so that she is recieving the same benefits
> she gets here.
>
> Any suggestions of ways to coordinate the group effort are greatly
> appreciated on my behalf.
>
> Hugs of Support and Understanding,
> Barb Miles
> (mother to Sara, 4 years old with Goldenhar Syndrome)
>
> Goldenhar Syndrome Support Network http://i.am/bbds.page
> Help Raise money for Goldenhar Syndrome Support Network at iGive.com
> http://www.iGive.com/html/ssi.cfm?cid=2696&mid=13537
>
>
> ______________________________________________________________________
> To unsubscribe, write to Goldenhar-unsubscribe@...
> ______________________________________________________________________
> Get a Free PC with a 3-year subscription to The Microsoft Network
> (after rebates). The new PC features a 400MHz Celeron, 32MB, 4GB, 40x
> CD, 3D Graphics and a 56K modem.  Come to
> http://www.listbot.com/links/myfavoritepc2 for details.  Act now
> since this is a limited time offer!
>


______________________________________________________________________
To unsubscribe, write to Goldenhar-unsubscribe@...
Start Your Own FREE Email List at http://www.listbot.com/links/joinlb

-----Original Message-----
From: Lisa Velickovich [mailto:madison888@...]
Sent: Wednesday, January 26, 2000 9:10 PM
To: Goldenhar Syndrome
Subject: I will


Goldenhar Syndrome - http://i.am/bbds.page/


Thanks Danielle,
I will send them to you probebly on Friday (Tommorrow) or on Monday if
that's a prob tell me.Well sorry this is short but i am going to the movies
to see Americian Beauty or girl interuppted.
Talk later Nat


______________________________________________________________________
To unsubscribe, write to Goldenhar-unsubscribe@...
______________________________________________________________________
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(after rebates). The new PC features a 400MHz Celeron, 32MB, 4GB, 40x
CD, 3D Graphics and a 56K modem.  Come to
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since this is a limited time offer!

-----Original Message-----
From: Barb Miles [mailto:bbds.page@...]
Sent: Wednesday, January 26, 2000 5:50 PM
To: Goldenhar Syndrome
Subject: RE: Moving Day


Goldenhar Syndrome - http://i.am/bbds.page/

It's only two hours away, but for a person who doesn't drive it could be
half way across the country.
Hugs
Barb

-----Original Message-----
From: danielle23@...

Goldenhar Syndrome - http://i.am/bbds.page/

Congrats on the house Barb, how far away is it from where you are now??

I'm sure Sara is going to adjust fine - kids are so resilient! .. just wait
and see..

Love D


______________________________________________________________________
To unsubscribe, write to Goldenhar-unsubscribe@...
______________________________________________________________________
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(after rebates). The new PC features a 400MHz Celeron, 32MB, 4GB, 40x
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since this is a limited time offer!

-----Original Message-----
From: Barb Miles [mailto:bbds.page@...]
Sent: Wednesday, January 26, 2000 5:52 PM
To: *Goldenhar Syndrome List
Subject: FW: [goldenharsyndrome] Tricia


Goldenhar Syndrome - http://i.am/bbds.page/


-----Original Message-----
From: Mamabear [mailto:mamabear@...]
Sent: Wednesday, January 26, 2000 6:30 PM
To: goldenharsyndrome@onelist.com
Subject: [goldenharsyndrome] Tricia


From: "Mamabear" <mamabear@...>

Tricia,

I tried to email you back but your email address came back undeliverable,
could you email me again?

Sandi, mom to Eva 6 mo with GS

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-----Original Message-----
From: Lynn Perlitz [mailto:sugarb@...]
Sent: Wednesday, January 26, 2000 7:24 PM
To: Goldenhar Syndrome Support Network
Subject: Moving Day


Goldenhar Syndrome - http://i.am/bbds.page/

To all our Members;

Don't feel bad about Barb's packing all by herself!!

We know who she is going to enlist don't we!!

I've been through almost everyone one of her moves with her.

(Sorry, just had to say it!)

Love & Hugs & kisses
Little Sara's Grandma

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since this is a limited time offer!

-----Original Message-----
From: danielle23@...
[mailto:danielle23@...]
Sent: Wednesday, January 26, 2000 6:01 PM
To: goldenhar@...
Subject: Re: Moving Day


Goldenhar Syndrome - http://i.am/bbds.page/

Congrats on the house Barb, how far away is it from where you are now??

I'm sure Sara is going to adjust fine - kids are so resilient! .. just wait
and see..

Love D


Goldenhar Syndrome - http://i.am/bbds.page/
Well it is finally official, my family (Scott, Sara and myself) will be
moving in a months time. I dread this move most of all though, because I
will be packing by myself, moving away from family, and most importantly,
having to take Sara out of a program that has benefitted her so much.
She's a changed little girl from only 4 months ago when she started
"school". Every day I am seeing differences in her, and in a way I am very
afraid to have to take her away from this program.
Her speech has grown by leaps and bounds, she's running and jumping like
every kid on the street, and she's made some very special friends.
I know the move will be hard on her, so I hope I will be able to coordinate
a program for her in Wainwright so that she is recieving the same benefits
she gets here.
Any suggestions of ways to coordinate the group effort are greatly
appreciated on my behalf.
Hugs of Support and Understanding,
Barb Miles
(mother to Sara, 4 years old with Goldenhar Syndrome)
Goldenhar Syndrome Support Network http://i.am/bbds.page
Help Raise money for Goldenhar Syndrome Support Network at iGive.com
http://www.iGive.com/html/ssi.cfm?cid=2696&mid=13537
______________________________________________________________________
To unsubscribe, write to Goldenhar-unsubscribe@...
______________________________________________________________________
Get a Free PC with a 3-year subscription to The Microsoft Network
(after rebates). The new PC features a 400MHz Celeron, 32MB, 4GB, 40x
CD, 3D Graphics and a 56K modem.  Come to
http://www.listbot.com/links/myfavoritepc2 for details.  Act now
since this is a limited time offer!


______________________________________________________________________
To unsubscribe, write to Goldenhar-unsubscribe@...
______________________________________________________________________
Get a Free PC with a 3-year subscription to The Microsoft Network
(after rebates). The new PC features a 400MHz Celeron, 32MB, 4GB, 40x
CD, 3D Graphics and a 56K modem.  Come to
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since this is a limited time offer!

-----Original Message-----
From: Barb Miles [mailto:bbds.page@...]
Sent: Wednesday, January 26, 2000 2:10 PM
To: *Goldenhar Syndrome List
Subject: Moving Day


Goldenhar Syndrome - http://i.am/bbds.page/

Well it is finally official, my family (Scott, Sara and myself) will be
moving in a months time. I dread this move most of all though, because I
will be packing by myself, moving away from family, and most importantly,
having to take Sara out of a program that has benefitted her so much.
She's a changed little girl from only 4 months ago when she started
"school". Every day I am seeing differences in her, and in a way I am very
afraid to have to take her away from this program.
Her speech has grown by leaps and bounds, she's running and jumping like
every kid on the street, and she's made some very special friends.
I know the move will be hard on her, so I hope I will be able to coordinate
a program for her in Wainwright so that she is recieving the same benefits
she gets here.

Any suggestions of ways to coordinate the group effort are greatly
appreciated on my behalf.

Hugs of Support and Understanding,
Barb Miles
(mother to Sara, 4 years old with Goldenhar Syndrome)

Goldenhar Syndrome Support Network http://i.am/bbds.page
Help Raise money for Goldenhar Syndrome Support Network at iGive.com
http://www.iGive.com/html/ssi.cfm?cid=2696&mid=13537


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